posted
Hi! I have my 1st dr. appt. Wednesday. Can't believe I have to wait that long. I've had a stiff/sore neck for about a month now. Then Thursday my right knee swelled and now both are swollen and don't want to bend. I also have muscle twitches when I am still (laying down or sleeping). I have memory problems too. Forgetting things I've done for years! And now I feel like I have the flu. Very tired and pains and aches in my joints & muscles. Feel horrible! If I do have Lyme Disease I hope my test is positive and I can get antibiotics right away.
Posts: 70 | From NJ | Registered: Sep 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
summer22:
Good luck with your appointment. I hope it is with a LLMD.
From your brief description is does sound like you have lyme symptoms.
I suggest you try to prepare a timeline of when you first became infected (if you remember as many times people don't even realize they've been bitten).
Then try to document the onset of symptoms.
This disease has many symptoms and they can come and go.
A LLMD will start treatment right away but in most cases you will get worse b/4 you start to get better.
Also the IGeneX results can take a few weeks & your LLMD will start treatment b/4 then.
Treatment has its own concerns. You have to be dilligent in support items like probiotics and liver cleansing.
Again good luck and I hope you get better.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Summer,
As you posted just yesterday noon for a doctor, I sure hope this is a Lyme Literate MD that you are going to see. To have found one and called today and be able to get in by Wednesday to see a LLMD is a miracle.
So, is this your regular doctor, a new regular doctor or a doctor you found through your local lyme support group.
It makes a huge difference in what to expect in your appointment.
* is this a recent bite ?
I see you've had a stiff neck, etc. for a month, so it's at least been going on that long.
If we can know what kind of doctor you are going to see we can then know what kinds of links to post for your appointment success.
You do know that most doctors really don't BELIEVE in lyme disease? It's important to know that and important to be sure the doctor you plan to see is one who is lyme literate and ILADS-educated.
Most non-educated doctors also do the wrong tests at the wrong labs. It's good to be aware of that.
I'll go ahead and post some links for you in case I don't get back to my computer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember:
* If you every had a bulls eye rash - or any kind of rash - after a tick bite, write down the description or take a photo with you to the doctor.
* An ELISA is a very poor test for lyme. A IgG and IgM Western Blot is better but not all labs do this correctly.
* Do not agree to a spinal tap (lumbar puncture) as a test for lyme. It's not an effective test for lyme but many doctors will still insist upon it.
* Do NOT take any kind of steroids (unless to save your live, your eyes, etc.) and then under guidance of a LLMD.
Most doctors do not know that steroids can make lyme MUCH worse and much harder to treat.
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
==========================
No test can tell you that you don't have lyme. However, you symptoms are highly suggestive of lyme. A history and clinical exam by a LLMD is what's needed more than a test, actually.
Most regular doctors rely too much on the test alone. Not a good idea.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===========================
Not everything is lyme. And lyme often travels with other infections. 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:
Avoid all artificial sweeteners. Google "aspartame" and also "MSG" to find all the other names for these toxic additives that can mimic lyme symptoms or make lyme much worse.
Take very good care of yourself. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
I never did see a rash or a tick but my kids play sports and we are always pulling them off of them and since I am there maybe I just didn't notice anything on myself. But I can't believe I wouldn't see a tick on myself. I checked with my insurance on infectious disease dr's. Called some to see when soonest I can get in and if they treat Lyme Disease. So, the appt. on Wednesday is whith a dr that treats it. Originally they had me coming in next Friday but I said I can't wait that long. Walking is difficult. Trouble climbing stairs. Thanks everyone for your replys and links!
Posts: 70 | From NJ | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Summer,
So that I - and others - can best read your post, I'm reposting with some white breaks added. Many here can read only short paragraphs. More than 3-4 lines and my eyes swirl in a sea of grey waves. Also, many brains here can only handle one point per paragraph.
Sometimes, I can trudge through but this morning, everything is a swirl.
-----------
Summer22 writes:
I never did see a rash or a tick but my kids play sports and we are always pulling them off of them and since I am there maybe I just didn't notice anything on myself.
But I can't believe I wouldn't see a tick on myself.
I checked with my insurance on infectious disease dr's.
Called some to see when soonest I can get in and if they treat Lyme Disease.
So, the appt. on Wednesday is whith a dr that treats it.
Originally they had me coming in next Friday but I said I can't wait that long. Walking is difficult. Trouble climbing stairs.
Thanks everyone for your replys and links!
(Summer22 in NJ) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Considering the severity of your symptoms, it seems logical to have gone through the process you did to find a doctor on your insurance plan.
Still, since you've been sick at least a month, it is highly unlikely that an ID doctor (infectious disease doctor) will consider lyme disease.
You will do best not telling the doctor that you've check the internet.
Most ID doctors do not "believe" in lyme - or think is very hard to get and very easy to treat.
Since you don't know for sure what is going on, there is a certain sense to seeing an ID doctor, one would think. Just know that most DO NOT at all know about lyme. But this may or may not be lyme. Hopefully, there is an easier explanation that the ID doctor can help you with. But most don't believe in infections lasting for a month's time.
Please read the above links so you are prepared to be dismissed.
And - if there is something besides lyme, or if this particular ID doc may know more than most - do keep that appointment on Wednesday.
But I'd also be calling your local lyme support group and asking about this ID doctor and your full range of choices.
While you have serious symptoms, many of us have been kicked out of the offices of ID doctors time and time again with similar or worse symptoms, even with a bulls eye rash. Be prepared for that.
Most insurance companies do not cover LLMDs.
Most ID docs will insist on a spinal tap (lumbar puncture) to confirm lyme. But it's NOT a proper test for lyme. DO NOT agree to this for lyme. A negative test will deny you treatment even if a later Western Blot is positive.
However, for some other conditions, it may be of help. As I said, not everything is lyme. But if you do have lyme, most ID doctors are not well-enough educated and will not offer adequate treatment. Most follow the IDSA guidelines. All that in links above.
Other tick-borne infections also need to be considered.
For lyme and all tick-borne infections, it is best to be assessed by a LLMD -- an ILADS-educated lyme literate medical doctor,
NOT an ID doctor who strictly follows the IDSA diagnostics or treatment guidelines. Definitely not.
There are very few ID doctors who are members of IDSA but have also ventured out to learn more with ILADS and not bound solely to IDSA methods. It is a very rare combination but does exist.
My hope for you is that you lucked upon one of those.
Good luck. -
[ 09-04-2010, 02:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See if you can borrow these from your local lyme support group TODAY. See/watch before your appointment on Wednesday so that you are fully prepared.
UNDER OUR SKIN (you can purchase a DVD at the site) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I just looked at the map. In addition to those in NJ around you -- You should also contact the lyme support groups in adjoining areas of Pennsylvania.
It's really important to be making some calls today. Ask about that ID doctor.
And, by the way, do you have Kaiser insurance? If so, it's much harder to get lyme treatment with Kaiser.
Best of luck. Hope you feel better and get the help you need.
posted
there is a good chance if it is lyme this doctor will only treat you fro 4-6 weeks and this will not be enough
but at least you can get a western blot done this may help with the diagnosis (but keep in mind no testing is 100 percent acurate for lyme)
the ELISA test is a complete waste of time and is only 50 percent acurate
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to all the notes above, the next time you go out you might stop by a health market and get
Probiotics
Magnesium Glycinate &/or Citrate
Milk Thistle
Olive Leaf Extract
You will need these. Refer back up to Burrascano's supplement list.
* Probiotics. Start now. Then, continue if you start antibiotics (abx) but take several hours way from abx. Abx destroy the good bacteria in your stomach. By getting on probiotics now - and then continuing all during abx treatment, is lessens your chances of developing a systemic yeast infection (candida).
* Milk Thistle is basic liver support to help with both managing toxins from infections and also the chemicals from treatment.
You can start with one Milk Thistle a day now and work up to more.
* Magnesium is helpful to the liver and to keep toxin level down and to calm the irritated nerves. It helps mood and sleep and lessens pain.
None of those should affect a test for infection.
OLE could however. OLE would be good to have on hand in case your ID doctor does not prescribe abx on Wed. And OLE can also help in many other ways but that's too complex to get into right now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Funny you should mention the reading thing. All of a sudden I am having trouble reading. Can't keep my concentration. Seems I'm "all over the place".
Thanks for the info.
Posts: 70 | From NJ | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yep, that concentration thing is typical. I'm sorry to load you up with so much reading but it's really necessary to learn as most doctors have not done so.
Rather than reading, first call the support groups around you. Maybe you can talk with some people.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keep that appointment, but find a Lyme Literate MD right away and make an appointment there. They often take a month or more to get it as they are very busy.
ID docs will only treat for a month.. if that. You will need more meds than that to kill it out.
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