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mom504
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Daughter feeling awful for 6 months, maybe longer spurts of fatigue over past couple of years. She's 18, made it through her senior year while visiting numerous doctors in our area trying to diagnose her with something causing her symptoms - all the typical ones with Lyme. No standard tick-borne illness tests were positive until we did the Igenex which she was only CDC+ on the Western Blot IgM, not the IgG. So she can't have the Lyme diagnosis. We've done even more testing - PCR showing different tick-borne bacteria including the one for Lyme. She has been diagnosed with narcolepsy (but does not have the typical genetic component). She has started the Deseret Borrelia-Babesia vials, takes numerous supplements and now we need to do more. She's also taking meloxicam for her pain. She basically has some autoimmune connective tissue problem (non-specified or something). A proposed treatment follows: if we want to attack this with antibiotics, then it would be oral antibiotics initially, taking two different ones initially, everyday, along with supplements and then the protocol would be adjusted depending on her response. The treatment with Argentyn 23 (silver hydrosol) is IV and requires a PICC line to be placed. The treatment is 4 days a week for one month with the dose increasing every few days. The infusions are slow and last for up to 8 hours. The cost is about $5000/for the month of treatment, not including the supplements. UVLRx is the ultraviolet light treatment and is twice or three times a week, and requires a peripheral IV to be started with each treatment (cannot be done through a picc line). Each treatment is an hour. The treatment costs $240 per treatment and 30 treatments are recommended. This is one of our limited local options. We're willing to go elsewhere if we know what's best. I've heard of Dr.S in California who helped someone we know. Another person went to a Dr. C in missouri. Another went to Dr. S in Massachusetts and I've heard good things about a Dr. L in Mass., as well. Johns Hopkins supposedly treats Lyme/tick-borne illness, Cleveland Clinic supposedly the same - we've thought about getting into Mayo....... Any thoughts?
Posts: 1 | From tennessee | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Welcome to Lymenet! PM sent for MD & DC.

Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc. Testing needs to be done through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne illnesses.

Your daughter 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.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

LLMDs are far and few between, unfortunately, so she needs to go where they are. At least half of all Lyme patients go out-of-state for proper care.

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":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

Here are some quotes on Lymenet about Johns Hopkins, Cleveland Clinic & Mayo:

"Doctors at Johns Hopkins do not believe in chronic Lyme, nor do 99% of infectious disease doctors."

"It's vital to become educated in the "controversy" about this and seek out the doctors who ARE informed. They are not at the CC."

"Hold the Mayo - absolutely!! Please stay away from there!! Mayo does not have Lyme-literate doctors on staff."

"All university hospitals are USELESS USELESS USELESS for Chronic Lyme/co-infections. Total waste of time. "

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.

Here is a link for you to read about "Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/TennesseeLyme/info

Maybe they can help.

Some more resources (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

http://www.lymenet.org/SupportGroups/UnitedStates/Tennessee/

Here are some links for you with good information about Lyme and children:

http://www.childrenslymenetwork.org/

Lyme and teenagers:

https://www.lymedisease.org/45/

http://www.livingwithlymedisease.org/teenagers-with-lyme-disease.html

http://www.lymefight.info/lyme-disease-general-information/children-teens-and-lyme-disease/

This is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

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.

Posts: 8699 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-
I could not read the full text but caught the last line.

you ponder: ". . . Dr. C in missouri. . . ."

Yes. Excellent.


" . . . Johns Hopkins supposedly treats Lyme/tick-borne illness, Cleveland Clinic supposedly the same - we've thought about getting into Mayo....... Any thoughts? " (end quote)

No to Johns Hopkins

No to Cleveland Clinic

No, no, no to Mayo.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
For a proper assessment, and then if treatment is indicated: you need an ILADS "educated" lyme literate medical doctor, what we call a LLMD. These doctors are not affiliated with university medical clinics as such clinics will go by only the IDSA criteria. More about that below.

My hands just can't type any more. Good luck.

For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations:


http://www.ilads.org

ILADS - International Lyme & Associated Diseases Society


https://www.lymedisease.org/

Lyme Disease.org


http://www.lymediseaseassociation.org

Lyme Disease ASSOCIATION


https://globallymealliance.org/

Global Lyme Alliance
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Many here can't read large blocks of solid text. It just become one big mass of swirling grey blobs to my eyes and I can't even look long enough to separate it out.

If you could go into the edit mode and add in space breaks that would help more be able to read and reply.

Generally, it's best to have no more than about 3 1/2 lines - finished. That's about 5-6 lines in the edit mode. Other than a sentence here and there that naturally stands alone, do not single space the full post, though, as that can be just as hard to read.

the edit icon is that tiny paper & pencil directly over your post. Good luck.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
grakay
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NO NO NO to the Mayo Clinic. They have been horrible to lyme patients.

Please find a LLMD.

Posts: 49 | From CO | Registered: May 2016  |  IP: Logged | Report this post to a Moderator
aklnwlf
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I went to the Mayo in Jacksonville FL twice. A total waste of valuable time and money. Find an LLMD please!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4864 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

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I went to Mayo in Minnesota. It was a joke. Don't go there unless you have something other than Lyme (although it was good to rule out other conditions).

I see Dr. C in Missouri. He is excellent. I waited 6 months to get in, but he was well worth the wait.

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
TF
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Member # 14183

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Breaking up mom504's post so all can read it:


Daughter feeling awful for 6 months, maybe longer spurts of fatigue over past couple of years.

She's 18, made it through her senior year while visiting numerous doctors in our area trying to diagnose her with something causing her symptoms - all the typical ones with Lyme.

No standard tick-borne illness tests were positive until we did the Igenex which she was only CDC+ on the Western Blot IgM, not the IgG. So she can't have the Lyme diagnosis.

We've done even more testing - PCR showing different tick-borne bacteria including the one for Lyme. She has been diagnosed with narcolepsy (but does not have the typical genetic component).

She has started the Deseret Borrelia-Babesia vials, takes numerous supplements and now we need to do more. She's also taking meloxicam for her pain. She basically has some autoimmune connective tissue problem (non-specified or something).

A proposed treatment follows: if we want to attack this with antibiotics, then it would be oral antibiotics initially, taking two different ones initially, everyday, along with supplements and then the protocol would be adjusted depending on her response.

The treatment with Argentyn 23 (silver hydrosol) is IV and requires a PICC line to be placed. The treatment is 4 days a week for one month with the dose increasing every few days.

The infusions are slow and last for up to 8 hours. The cost is about $5000/for the month of treatment, not including the supplements.

UVLRx is the ultraviolet light treatment and is twice or three times a week, and requires a peripheral IV to be started with each treatment (cannot be done through a picc line). Each treatment is an hour. The treatment costs $240 per treatment and 30 treatments are recommended.

This is one of our limited local options. We're willing to go elsewhere if we know what's best.

I've heard of Dr.S in California who helped someone we know. Another person went to a Dr. C in missouri. Another went to Dr. S in Massachusetts and I've heard good things about a Dr. L in Mass., as well.

Johns Hopkins supposedly treats Lyme/tick-borne illness, Cleveland Clinic supposedly the same - we've thought about getting into Mayo....... Any thoughts?

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
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mom504, have you seen this thread that is discussing your proposed protocol?

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=136233;p=0#000004

I got well over 12 years ago by going to a doctor who followed the Burrascano lyme treatment protocol. The protocol is here:

http://www.lymenet.org/BurrGuide200810.pdf

It is a high-dose, combinations of antibiotics protocol. I had lyme (and babesiosis and bartonella) undiagnosed for at least 10 years. Still, I got rid of it by Burrascano style treatment.

Then, I sent at least 5 of my friends to Burrascano type doctors and they all got rid of their lyme and coinfections also. That is why I believe in the Burrascano protocol. I have seen it work over and over with friends.

When Burrascano was practicing, he was the #1 lyme doctor in the world. They came from every country on the planet to be treated by him.

So, I recommend you first try a doctor who follows Burrascano. If you want some names, I can give them to you.

I would NEVER spend all of that money ($5,000 for one month!) on your proposed protocol. And, how many people do you know that it has cured?

Burrascano was the lyme disease pioneer. He treated lyme for over 25 years. He wrote up his protocol (created based on what worked with his patients, and using the pathology results of Dr. Alan MacDonald who analyzed Burrascano's patients' blood) and sent it out free to doctors.

Now, it is on the Internet, free to anyone who wants to read and study it. I strongly suggest you study it to get an education on this disease which is really many diseases.

Each disease has to be treated with different antibiotics/antiprotozoans.

I always advise every lyme patient to go to the very best lyme specialist they can possibly afford. You pay for expertise (but it doesn't cost as much as what you are talking about).

There is a lyme doctor learning curve. You have to find out who the best lyme doctors are and then wait to see them and travel to see them.

This gives you the best chance of getting rid of this hard to cure disease.

You want a doctor whose practice is only lyme disease or at least half of all patients are lyme patients. That is how the doc develops the expertise necessary to cure someone. And, generally it takes about 10 years of experience treating lyme before a doc can help most cases of lyme.

I have been helping people find good lyme docs for at least 13 years. That's why I stick around LymeNet even though I have been cured for so long.

I have thousands of emails from lyme patients telling me about their doctors. That is how I have learned who the best doctors in the east are.

Let me know if you want some names.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
bluelyme
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I would take her to sierra i in az if i had the funds .ot buy a plasma rife .do the dna connexions test if you need further confirmation and coinfections .no doc needed ...if you want the best allopathic dr j in dc .however with a but

--------------------
Blue

Posts: 1538 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
   

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