Lyme Disease Community
Dead end for now
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Dead end for now

Hello second family,

I am writting cuase I feel lost. I am not suppose to go back to the neuro until I have another episode. This decision came after the Lyme titer test came out negative. Yet they could tell me what type of titer test they did (Elisa, or IFA). Typically I would start right away trying to figure out my next steps, but I am fighting off a sinus infectation right now. If this sinus infectation comes on, usually my sxs will come back with a vengeance. So, I guess maybe I shouldn't fight it lol!!!

I just hate the fact that I am back to square one. I don't get how all they can say was it was a titer test. I haven't found just a titer test for lymes during any of my research. Well that's my update, I will be praying for all. May God bless ya,

Kimberly
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This answer will be in five parts, since MedHelp is getting cranky about anything longer than a few lines --

(Hello, MedHelp?  What gives?)
======================================================

(Part 1 of 5)

I would think the written test results would show what kind of test it was and not just a 'titer', which as someone (Rico?) posted a few days ago is just a measurement, not the type of test itself.

You are NOT back at square one.  You know more now than you did before, and you have some test results that document where you were on the day those tests were done.

If you are not well enough to make the calls and bug the docs, then have someone do it for you, with the written authorizations apparently required (see below).

The following is copied from the Texas state medical board FAQs on obtaining copies of your records:

Their website is (take out all the spaces):

www . tmb . state . tx . us / consumers / faq / mrec . php

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(Part 2 of 5)

====================================================

==>  How do I obtain a copy of medical records?

-- Medical records maintained by a physician and/or hospital are confidential and legally cannot be disclosed to anyone without the consent of the patient. There are certain exceptions to this rule, such as required reporting of certain information to state and federal agencies, etc.

-- State law [Medical Practice Act, Section 5.08(K)] allows a patient to obtain a copy of his records, or ask that a copy be sent to a new doctor or someone else, such as an insurance company.

-- This law requires a physician to release copies of a patient's medical records (or a narrative summary) if the physician receives written consent from the patient or the minor patient's parent or legal guardian. The written consent must specify the following:

----    The information or medical records covered by the release
----    The reasons or purposes for the release
----    The person to whom the information is to be released.
----    The physician shall furnish copies of medical records requested, or a summary or narrative of the records, unless the physician determines that access to the information would be harmful to the physical, mental, or emotional health of the patient, and the physician may delete confidential information about another person who has not consented to the release.

The physician shall furnish the information within 15 business days after the date of receipt of the request, and reasonable fees for furnishing the information shall be paid by the patient or someone on his behalf.

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(Part 3 of who knows how many parts ... I'm having to cut this into smaller and smaller bits to get the system to accept the posts)

-- What are reasonable fees for medical records?

Board rule 165.1 defines a reasonable fee to be a charge of no more than $25 for the first twenty pages and $.50 per page for every copy thereafter. For x-rays, $8.00 per film. In addition, a reasonable fee may include actual costs for mailing, shipping, or delivery. The physician shall be entitled to payment of a reasonable fee prior to release of the information unless the information is requested by a licensed Texas health care provider or physician, if requested for purposes of emergency or acute medical care. In the event payment is not included with the request, within ten calendar days from receiving a request for the release of records for reasons other than emergency or acute medical care, the physician shall notify the requesting party in writing of the need for payment and may withhold the information until payment of a reasonable fee is received.

-- How should I mail my request for records?

It is best to mail the written request for records to the physician by certified mail, return receipt requested. This method provides assurance that the request was delivered. The physician is not obligated to honor oral or telephone requests for records.

Although physicians are required to provide copies of records that they maintain, they are not required to create a new report in a special format to satisfy the specifications of the patient. The physician also is not required to fill out special forms (including business records affidavits) or insurance papers. These are extra services, which must be requested and fees negotiated with the physician.
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(Part 4)

-- What about hospital records?

Requests for records created and kept by a hospital should be directed to the hospital rather than to the physician. Fees by hospitals differ from those records provided by physicians.

--    Samples of Record Requests

The following are samples of record requests which contain the required three elements mentioned above:

--------------------------------------------------------------------------------------
Dear Dr. ___.

Please send a complete copy of my medical records to me for my personal files.

(Patient signature, followed by complete name, legibly printed or typed).
-------------------------------------------------------------------------------------

-- How long do physicians have to keep medical records?

Generally, seven years from last treatment.

-- Additional tips for obtaining records:

    --- Don't forget to provide a complete address and zip code for the location where you wish to have the records sent.
    --- If you have changed your name, don't forget to provide the name as it appeared in your medical records.
    --- If your name is not uncommon (e.g., Mary Johnson) provide your date of birth or social security number to ensure proper identification.
    --- If it has been a long time since you have been to the doctor's office, call before mailing the request, to be sure the doctor is still located at the same address.

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(Part 5 of 5)

Yes, the Texas Medical Board is making this as awkward as possible, so have a friend or family member write up the request for your signature and get them to send it and then follow up on your behalf.
    
Do. Not. Give. Up.

And this is just another reason to ALWAYS get copies of test results when AT the doc's office AT the appointment rather than wait till later ... tho maybe California law (where I am) is just more patient-friendly in this regard.  I would still be sure to get copies, even if it costs a little.

I would say something really rude here about the docs in Texas, but I'm sure they're not *all* jerks as the medical board's position would indicate.

Do. Not. Give. Up.  We've made it through, and you can too.

--end--
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Thanks I am not giving up, but right now my family have there own things going on maybe tomorrow I will call and see if they can fax me the results. I guess I just felt lost a negative means I have to fight to get heard and double checked.

Now on to one more question has anyone heard of using a type of garlic for lymes? Does anyone know if it works? I was looking up home remedies for this sinus bull I have going on, and found a way to garlic as an antibotic (antibiotic). Another type of garlic I found may work for lymes. But it does cuase herx. Do you think this will work.

Well May God Bless everyone,
Kimberly
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Kimberly,garlic does help me a lot while I am waiting for my test...I started eating garlic...one Russian doctor advised ...many Russians with Lyme have garlic at least 3 times a day! Don't give up,please. You have kids ...they need you ...a lot! At least you have to fight because of them...you are not allowed to give up!
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May God bless you and your family!
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The garlic can't hurt, but I don't know that there have been any studies on its effectiveness in Lyme.  
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One Russian guy with Lyme believes that he is ok because of garlic,he has chronic form..and he has an  allergy on antibiotics so his treatment garlic and herbs...castor oil for joint pain..For right now he is very good
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That's good -- garlic can be powerful stuff.  And it tastes good too.  No reason not to try it.
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Thanks everyone. I had read a study or two. Regular straight up garlic they found was just a bit helpful but another form of garlic that started with an A... maybe almost a cure. I am grateful for all the advice. May God be with ya all,

Kimberly
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I've seen the term 'allicin' used in connection with garlic -- 'allium' is I think the scientific name for the garlic family, and allicin is a concentrated form of the active ingredient in garlic.

Another approach:

When I had a systemic fungal infection a couple of years ago (long story), I chopped up raw garlic in fairly large slivers and stuffed 2-3 of them into empty (vegetarian/vegan/something digestible) capsules I got in a big bag at the pharmacy, then swallowed the capsules.  I wouldn't have been able to take the raw garlic straight any other way because it's so strong.  It worked well.
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Just think of a dead end as a confirmation that this isn't the path you'll continue on. Or even better, don't think of it as an "end" but rather as a time to change direction. You need to find another path, which will involve time and what might feel like backtracking, but is necessary in order to move forwards again.

You might seriously consider doing what it takes to get a Western Blot at IGeneX, and perhaps a CD57 test as well.  If you have to pay out of pocket, then do it. Your health is important. If necessary, ask your family for help.

Your current doc will not be of help, so you'll need to find another one.  Are there inexpensive walk in clinics that you can contact to ask if a doc there would authorize a Western Blot for you?  Some drugstore chains and even Walmart in some places have clinics.  You can also ask your Lyme support group if they know of any doctors in the area willing to authorize Lyme tests.
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Sorry...hit Post accidentally...

I am so sorry you didn't get the answers you hoped for from this doctor.  You must feel discouraged right now.  But don't give up. Hang in there.  Just focus on the next step.  One step at a time. Or maybe one step with an eye to the next step. ;)

P.s. Lyme is known to cause recurring or chronic sinusitis.  The Neilmed sinus rinse has been really helpful for me with my earlier allergy and sinus issues. It flushes out the sinuses, making it easier for them to heal without drying them out with decongestants.  (I ended up with a full blown sinus infection once after taking sudafed for two weeks to reduce my sinus congestion.)

Just make sure you use purified water in a sinus rinse, not straight tap water, or you could give yourself a much worse sinus infection from a nasty bug in the water. A easy way to do it is to boil the water in the microwave first (careful, it can explode if done on High), and then let it cool down to lukewarm before using it.
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Thanks Rico and everyone,

I had started to feel discourage, but I keep coming back to my faith. Thanks also for the info on sinus infection. That is really helpful. See I never use to get sick, but over the past few years sinus infectations have become more and more common.

I agree about trying to take a decongestant, it doesn't help. I tried that last year and ended up with my worst sinus infection ever. Mine always start out the same way. A sore throat, and then that goes away I feel better for a day. Then a cough comes on. The worst part is once its full blown all the other sxs act up. Then they don't go away with the sinus infection.

I am not gonna give up, but for now I am going to back off. I have alot of other things to focus on. My life hasn't stopped just becuase I believe I got lyme. I am gonna try the garlic for a bit maybe to just help the sxs not be so harsh.

Thanks Rico and everyone the support has been amazing. Today I maybe heading to the doctor to get checked out. Especially sinus my voice is almost gonna and my throat is extra sore. Praying for everyone's well being. May God bless you all,

Kimberly
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