posted
Hi! I feel a little silly... as if I'm REALLY reaching but... here goes..... I was bitten by a tick several years ago (2002) -- whether I was bitten is not in question. I was.
I was in advanced (military) training and... when I noticed the tick -- we "burned" it off and I didn't think a great deal about it anymore (silly, I know). I don't remember if I felt "flu-like" symptoms because my focus was on completing the training....
The oddest thing I do remember is the site where the tick was embedded would raise (swell) and itchy periodically (even years after). Fast forward several years... I notice now that I have quite a few of the symptoms that are associated with LD....
I have a doctors appointment on Monday. I'm trying to research what could be wrong and present my questions logically rather than emotionally.
My plan is to be very proactive with my health (that's difficult to do in the military). Again, I have quite a few of the symptoms associated with LD....
My question: is it totally unlikely that I could be having symptoms/be infected so late after being bitten (also, I live in Md but was bitten in Tx). This is all very frustrating -- I've been going back and forth to the doctors regularly since last July....
BTW, I think it's great that you guys are so supportive of each other!
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
FIND the BEST LLMD you can where you are and GET there,,,whatever that takes!!!
ALL else in life is second fiddle to YOUR health right now!! Run dont walk and get evaluated and quit wondering!!
AND if that doc doesnt work out,,,make a plan B ahead of time,,,then not so likely to NEED it!!
LOTS of ticks and lyme AND co's in BOTH Texas AND Maryland!! Treat em and WIN!!!!says--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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bettyg
Unregistered
posted
dig me,
i wrote a PM to one of our retired military vets; daise, to stop and look for one of her posts. her pc has been giving her problems of stopping in here.
don, i did give her the LLMDS in the state she is in.
another vet is PROUDTOSERVE; so i hope you 2 can talk privately!!
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posted
Thank you "JustDon" and Bettyg"!
Posts: 12 | From Md | Registered: Apr 2008
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daise
Unregistered
posted
Hi dig/me,
I'm a veteran!
Yes--it's hard to get decent healthcare in the military / VA systems.
You got a tick bite. That doesn't mean you have Lyme disease. However, about 40% of adults who get Lyme from a tick never get the bulls-eye rash.
You said it was imbedded for awhile after you tried to burn it off. If it had Lyme or coinfections, then that gave it a further chance to get germs into your system.
That it's still causing you trouble is significant: show it to your LLMD.
I had a huge bulls-eye rash, didn't know it was Lyme, had no Lyme symptoms and then BAM nine years later I had all sorts of serious Lyme signs and tsymptoms.
Testing is problematic. Refuse the ELISA test from the military, also called the Lyme Titers test, because it's bogus and may be used against you.
The gold standard for testing has been the western blot. Your blood draw is sent to IgeneX in Palo Alto, CA. However, they do not catch most cases of Lyme and coinfections.
Recently, Fry Lab in Scottsdale, AZ claims to have a better test. Some here have reported that they were happy using that Lab. I would go by what your LLMD says.
There is also the CD57 count test. This is a SCREENER used for those with Lyme for a year and probably more: it shows how far down your immune system has been worn and is specific to Lyme. Your blood draw is sent to LabCorp Lab in Dallas, TX.
Please remember that Lyme disease is a clinical diagnosis.
The VA Healthcare System does not properly diagnose nor do they properly treat Lyme disease. That is their nationwide, unwritten policy. Military clinics and hospitals, by all accounts, are the same.
I'm sorry, but they just don't. Neither do a number of insurance companies pay for treatment, either.
First--you need an LLMD (Lyme-literate MD) who is also an ILADS physician. I understand BettyG sent you a name in MD. That's great.
There is a controversy. No--it's a war going on between the IDSA (Infectious Disease Society of America) and ILADS (International Lyme and Associated Diseases Society.)
IDSA says chronic Lyme doesn't exist. That's because they've sold their souls. They represent your local infectious disease doctors.
ILADS doctors are our Hero doctors becasue they are willing to treat we with Lyme, many of whom have very complicated Lyme. They do this at risk to their livelihood: some state medical boards are bringing legal action against them
Why is this being done? Because America has turned topsy turvy. It's profits over patients. Some insurance companies don't want to pay for Lyme treatment.
Some doctors souls are owned by some drug companies, and they'd rather sell you painkillers (almost none work with Lyme) or statins (can be dangerous for Lyme patients) or antidepressants.
The VA in NM passes out antidepressants like candy. With no screening!
Wallstreet, private investors and some politicians are involved. Keeping people ill is profitable.
That said, I hope you won't get so stressed when conventional doctors tell you in one way or another that "it's all in your head."
We have to keep our stress level down!
Chronic Lyme is defined as neuroborreliosis--a brain infection of the Lyme pathogen: a neurological disorder.
Signs and symptoms past that are individual, such as Lyme arthritis (one or both sides,) Lyme carditis (Lyme in the heart muscle,) lyme in the muscles, head to foot, Lyme in the GI tract, and so forth.
It's been about 6 years since the bite. Do you have head symptoms such as memory, word recall problems? Start there, because if you do have Lyme, you are long past "early Lyme" and would have head symptoms (neruro stuff.)
Such as: bad brain fog, fatigue, chronic exhaustion? Or Bell's palsy when half or all your face is paralyzed? (eye and mouth droop; hearing problems?) Eye problems. The cognitive stuff. Head pain anywhere in your head. Bad stress.
Where the Lyme germs land is sometimes like Russian roulette: psychiatrict troubles can happen. Anxiety.
There are many signs and symptoms, as you've probably figured out.
We're all different. The approach to treating Lyme is different according to what each of us need.
Ticks with Lyme are all over: each of the fifty staes, Europe (many service people have been to Germany, where it's hyperendemic) including Scandinavia, across Russia and Asia, Australia, on the African and South American continent.
To complicate things, ticks also transmit many other germs, such as ehrlichia, bartonella-like organism and babesia (a malaria like illness.)
Because of all this and the fact that if you have a tick borne illness then you may have had it for 6 years, please know that Lyme treatment takes time--years. OK?
The overwhelming majority of conventional doctors will shock you if they find out you think you have Lyme. Their abuse is phenomenal.
While you are waiting for your appointment, you may wonder how you are going to pay for all this treatment (expensive.) Disability is common.
If you can't work, you might get a lawyer specializing in getting Social Security Disability (SSDI.) That's a long haul to get that--2 or 3 years.
See BettyG's newbiw information.
Or, you can apply for a military pension: but if you are now in the military, that's a problem! You needn't be 65 to get a pension.
Talk with A REALLY GOOD VA person--maybe someone outside the circle of the VA. (i.e call the DAV and ask what's the best agency to go to. Tell them your situation!) Ask around! A good person who will give you reliable information is important!
You are in a sticky stituation, being in the military, no doubt about it. Mention Lyme to a military hospital doctor, get it in writing that they did not take you seriously (they won't) and then try applying for state Medicaid.
I was told that since I can go to the VA I can't get Medicaid. Bull! I got Medicaid.
You can then usually chose your Medicaid insurance company. Chose wisely: does one of them treat chronic Lyme disease?
You find out a lot of things by contacting your local Lyme Support Group. They can open doors, locally.
While you are waiting for an appointment with the LLMD, you might see your military PCP and get tests on ANYTHING going on in your GI tract: aches, pains, bowels movements unusual, etc. Ask them to check your thyroid because you are tired.
If you have any pre-existing conditions, you might treat those to optimal.
Lyme disease is a fight! Any way you look at it.
YOu are welcome to send me a private messaage (PM) anytime.
THere is a military Lyme support group on Yahoo. May I suggest that you go there and get their daily emails--very interesting.
I recommend you go to www.ILADS.org, to "Treatment Guidelines" and that will take you to Dr. Burrascano's 33 pages of tips for 2005: That's essential! Also, you might print-out the ILDAS Guidelines, above that.
Maybe your library has a copy of "Coping With Lyme Disease," by Denise Lang and Kenneth Liegnr, MD. This is very informative.
Also, 2 new books, "It's All In Your Head" by PJ Langhoff. Book 1 has information on the neuropsychiatric problems that can happen.
Book 2 has 80 patient stories--written by the patients themselves, from around the world. Both show the diversity of symptoms.
I wish the very best for you. Having Lyme is information overload! It's also a lot of work!
posted
daise, thanks for stopping by and helping our newbie out with your personal VA experiences, and lack of them!
we don't sugar coat anything around here; we tell it like it is so you can prepare yourself for the fight of your life!
KNOWLEDGE IS POWER, so read, read, and read!
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I sent a private message
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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daise
Unregistered
posted
Hi Dig/Me,
I'm sorry there are so many typos, above, in my response. I had to use another computer with a hard-to-read screen.
I want to be clear about something. There is no such thing as a Lyme-literate military doctor. The military (and the VA) do not properly diagnose or properly treat Lyme.
For example, they may give a few weeks of an antibiotic and beyond that, tell you that any signs and symptoms are "all in your head" (or whatever) or tell you it must be something else.
Lyme and coinfections are complicated and when beyond "early Lyme" (the first three months) it means prolonged treatment.
Like BettyG says--we don't sugar-coat information!
Welcome, Dig/Me. Post as often as you like and search this site for more information.
posted
Sorry all it took me a while to see this posting.
HI there dig/me.
I am currently active duty, and have tested possitive for lyme with the ELISA test and The Western Blot Test (according to Walter Reed).
BUT according to the military I dont have Lyme because IT IS NOT THE SEASON. Can you believe it?
I am secretly going to see a LLMD at the end of this month.
I have talked to the head of the hospital on base and 2 other doctors in the primary care clinic.
I have called tricare and went name by name with them through all the LLMDs in this area and not suprisingly none of them are approved providers.
The only way I can see an LLMD is if my primary doctor reffers me. NOT going to happen.
I pray that you have more open minded doctors than I do.
If not I hope you are ready to leave the military.
I dont know what they would do if they find out I am seeing someone else. Probably be charged with distruction of government property
I will help as much as I can, I might have answers for you, because as far as the military goes, if you have a question you can find an answer anywhere.
Probably wont be the answer you want though.
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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bettyg
Unregistered
posted
this was just posted elsewhere so am copying it here for your use ... to ALL of you military folks!!!
Military Lyme Patients using LLMDS vs. military drs NON-LYME LITERATE from LymecaregiverNY 4-8-08
Chest pain in a military recruit.Beck AS, Okulicz JF, Rasnake MS. Department of Internal Medicine and Department of Infectious Diseases, Wilford Hall Medical Center, Lackland AFB, Texas 78236, USA. [email protected]
Lyme borreliosis remains an important and common vector-borne illness in the United States, Europe, and Asia. In the majority of cases, it presents as a localized rash that seldom causes further complications with antibiotic treatment.
If left undetected however, various neurologic, cardiovascular, and musculoskeletal manifestations may occur.
Reported here is the case of a basic military trainee who first presented with cardiac manifestations of Lyme disease, highlighting this tick-borne illness as a rare, easily forgotten, and treatable cause of complete heart block.
PMID: 18364626 [PubMed - indexed for MEDLINE] ******************************************* Get yourself to a LLMD.
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daise
Unregistered
posted
Hi Dig/Me,
And proudtoserve, too. It's about time we connected! I'm a vet.
I have "heard" that Tricare paid for some Lyme meds, for some with Lyme.
You might try Yahoo groups, Military Lyme Support. You can post about Tricare and also get daily, informative emails.
posted
Quoting Daise: "While you are waiting for an appointment with the LLMD, you might see your military PCP and get tests on ANYTHING going on in your GI tract: aches, pains, bowels movements unusual, etc. Ask them to check your thyroid because you are tired.
If you have any pre-existing conditions, you might treat those to optimal."
I had a head to toe CT scan done, as they were searching for a cause of all my symptoms.
whats crazy is my chief complaints were my fever and exhaustion. they never thought to check my thyroid, they found stuff by happenstance
they found several growths on my thyroid, and both lobes were enlarged. I just had a biopsy on them done.
I guess the good thing about the ducks searching for any and everything but lyme, I now know everything there is to know about my body and blood.
Just a side note: Is it true that lyme likes to create cysts on the thyroid? and what about the liver?
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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I am going through my PM's and will respond... THANK YOU!)
Well, it seems that last year (Sep-Oct timeframe), when my doctor mentioned Lyme as a possiblity -- he also tested me for it. I found out today that the test was NEGATIVE.
I never knew that I was tested in order to follow up on the results... but that dr also passed away suddenly in Nov or Dec and the subject never came up again....
Fast forward.... My appointment (today) was HORRIBLE and, aside from crying all day, I am terribly discouraged!
I logically presented why I thought my doc, based on symptoms alone-- should begin antibiotic treatment. (I WAS to attend a training school on this coming Monday so my options concerns are time-limited)
The doctor refused to consider Lyme (even BEFORE she looked at my labs)....
She hadn't reviewed my medical records.
She was not interested in the symptom list I'd completed from Joseph J. Burrascano, Jr, MD. -- DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTBI....
She was apologetic that she was only able to evaluate me on my lab results (which, for the most part have been WNL with slight variations here and there). But her apology yet dismissive attitude, not only cancel each other out but, it's not helpful to my status and really means nothing to me....
I "appear" healthy, however, I feel LOUSY!
I spoke at length to my boss and he is very sympathetic to my plight but, obviously, he's not a doctor.
I must admit, the drs reaction did put me off and it does make me feel a bit and question myself....
My plan: absorb the cost of seeing a LLMD. If his testing/evaluations are negative then I will see the psychiatrist... and rheumatologist, and do the sleep study..... as the "good" doctor suggested (ok, not the psychiatrist... don't feel that's my concern)
Posts: 12 | From Md | Registered: Apr 2008
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daise
Unregistered
posted
Hi Dig/Me,
The reason I suggested that you get testing for other things done at the military hospital is that you can then bring those test results to your LLMD.
It could help get the ball rolling for your proper care!
I'm sorry, I was very tired when I wrote that and forgot to include that.
You went to your military doctor, you presented yourself well, you were prepared, you were rational, you are ill and desperate and you needed his or her help ... and you got punched in the nose, so-to-speak.
Whether it's ducks in military clinics and hospitals or conventional ducks outside the military / VA systems, a duck is a duck. Quack quack!
You cried. That's normal. Did you also get scared for US citizens everywhere, faced with the same duck talk?
Yes, it's frightening. America: topsy turvy.
I hear you!
Nearly everyone in Lymeland has a carbon copy story. No, they have many stories. I've been before over 30 ducks. I guess I like being punched in the nose.
But I thought, What else can I do? I have to keep asking, what's wrong with me? And keep asking, what's wrong with me? Because I have no choice! I can't work. My pockets are about empty. I'm in so much pain. I'm dieing. Please help me. "Doctor, what's wrong with me. What do I have?"
Been there, done that. I figured out for myself that I have chronic Lyme disease. Seems nearly everyone has to do that.
Then I did what you did, I brought Dr. Burrascano's 33 pages with the 3 page assessment, filled out, to my PCP. He stood and said, "Lyme disease is extremely rare and only in Connecticut!" (I live in New Mexicio.)
I jumped over his head and got a nurse case manager and an LLMD who was an ILADS doctor and the nurse (who works for the insurance company) then dictated to my PCP. Hah!
Now, I'm getting very good Lyme and coinfection treatment.
Now I have a well of anger that I am spewing forth--in a civil way--to try and make a difference.
I hear you!
Yes. By all means, get yourself an LLMD who is also an ILADS doctor. You're worth it. Try to chose wisely from the names sent to you. For example, will you feel comfortable with that doctor?
Maybe Tricare will pay for meds: post or send a PM about Tricare at Military Lyme Support on Yahoo Groups.
Maybe state Medicaid. Which LLMD has experience getting prior authorization for Lyme meds from Tricare or Medicaid? Some of our meds are very expensive.
You wrote: "I must admit, the drs reaction did put me off and it does make me feel a bit and question myself.... "
Oh yes. We question ourselves when faced with what our ducks said and did to us. You're not crazy. You're normal. And you are ill and scared. Who wouldn't be?
You have to fight, just like you've been doing.
You might bring Dr. Burrascano's list to the LLMD.
When seeing a LLMD... given the fact that my initial test was negative-- will they suspect my problems are not related to Lyme too or is it typical that they take in a whole picture to include all of my symptoms?
I will take the symptoms list with me -- I am just trying to prepare myself mentally.
posted
daise, in the huge runaround you got for being a vet and NOT getting lyme treatment, did you ever get your federal senators/house reps from DC involved in your plight?
were they of any help? will need to quit soon my non-stop bronchitus cough is acting up waking hubby from a sound sleep.
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Dig Me,
If it helps any, during my five year search of what was going wrong with my body, I was being sent to specialist after specialist. And in this path, I tested negative THREE different times for lyme. THREE!!!!!
And one was in the E.R., so I had totally given up on that diagnosis.
I started seeing an N.D. and it was him that said I needed more extensive testing. My PCP at the time was FURIOUS. But my N.D. gave me the Igenex blood test and I tested positive.
With this said, I was sent to an LLMD and he is the one that said that most people feel they have to test positive before seeing them but they are the one type of doctor you would go to BEFORE you tested positive since the regular doctors out there are NOT doing the proper testing.
If you go see the LLMD, you can get the Igenex test and will probably have the answers you are seeking. If nothing else, let a SPECIALIST rule it out, but don't settle for the doctors that know NOTHING about the illness.
Just my two cents.
Good luck! Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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I'm glad you got an LLMD. It's a beautiful thing to be before one of these hero doctors who help us.
Were your first three negative tests the ELISA (Lyme titers test.)?
You said something so important that I, for one, would like to quote you in bold:
"With this said, I was sent to an LLMD and he is the one that said that most people feel they have to test positive before seeing them but they are the one type of doctor you would go to BEFORE you tested positive since the regular doctors out there are NOT doing the proper testing." by tdtid--Cathy.
I see you're hanging-in there. It's tough, I know.
The LLMD's know well that Lyme disease is a clinical diagnosis. They consider the individual sitting in front of them.
I tested negative by the ELISA (the Lyme titers test.) That is a bogus test and used by insurance companies to deny treatment.
Some few (compared to how many have this disease) test ELISA positive, and that can help people as far as getting referred to an LLMD--I'm talking about those outside the military / VA systems.
It can also hurt you as being a negative on your medical records.
Sometimes they test positive when they don't actually have Lyme. So much for the ELISA.
I tested negative 3 times by the "gold standard" western blot (that is sent ONLY to Palo Alto, CA.) About only 40% test positive by this test. And yes, it is reliable if you test positive.
But what about the other 60% of us who really do have Lyme? That's why chronic Lyme disease remains a clinical diagnosis.
I got treatment paid for by my Medicaid insurance because I tested positive by the CD 57 count blood test (that is sent ONLY to LabCorp Lab in Dallas, TX.)
The CD 57 count test is specific to Lyme and it is used as a SCREENER for DIAGNOSIS to test how far worn down from Lyme your immune system has become.
Some doctors use it to test progress in treatment, yet questions have been raised about that.
Later, in treatment, I tested negative by western blot for Lyme, Ehrlichia, bartonella and babesia. I've been clinically diagnosed with all but ehrlichia.
On-going multiple antibiotic treatment is helping me. I thank God for this.
Insurance companies seem to like to see a positive blood test, to our detriment.
Do you see some of the hang-ups in conventional medicine?
I'll quote tdtid again for you because you are in the throes of Lyme and must be feeling really awful in your head with word recall problems, concept recall problems, confusion, information overload and so forth (we all know what that is):
"With this said, I was sent to an LLMD and he is the one that said that most people feel they have to test positive before seeing them but they are the one type of doctor you would go to BEFORE you tested positive since the regular doctors out there are NOT doing the proper testing." by tdtid--Cathy.
I sent you a Private Message about something else. To retrieve it, go to near the top of any page and click, "My Profile."
Perhaps the link to Military Lyme Support could help with information about Tricare.
I have an appointment on Tuesday with a LLMD who, I'm told, clinically diagnoses.
I just want treatment -- the cost is second!
Thanks so much -- your words and general support of me and others is SO very helpful... I don't have the words to tell you how much!
Posts: 12 | From Md | Registered: Apr 2008
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daise
Unregistered
posted
Hi BettyG,
You asked if I ever got my Federal Senators/House reps from DC involved in my case. No, I didn't--I fought to get state Medicaid and won.
Now that I'm feeling better, of course, I'm emailing letters to senators/congress people from my state, just like the LDA is requesting from us. I'm sure you've done that.
_________________
May I take this opportunity to give that link for all to see? Here it is:
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
The military knows all about these diseases and even the distribution areas around the country. They send ticks to a lab and those that run the lab are very knowledgeable. Perhaps they have their head in the sand due to the fear of financial obligations.
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
daise/all,
i just got home from my pcp which was 1 of 2 appts. i canceled last monday; but i needed it and they had 1 opening today.
i'm starting to TURN the corner with this VIRUS that has hit our area! no meds ordered for me; i was doing everything i was supposed to be doing.
only had a slight coughing spell less than 1 minute vs. some that go on for several continuous minutes.
did get himto tell me which ABX i should take for next week's dental teeth cleaning due to my hip replacement. 1 BIAXIN! some some left ...
got him to write out blood lab sheet so i knew for sure what i'm giving next monday.
i'll just be glad to get any QUALITY OF SLEEP again; my body is so worn out. later;
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