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» LymeNet Flash » Questions and Discussion » General Support » Literature to make my doc BELIEVE

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Author Topic: Literature to make my doc BELIEVE
katc
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Hi all, just wanted to know if anyone knows a good piece of information to better help my doctor believe my health problems are from Lyme and not MS or Fibromyalgia.

Thank You

Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
hiker53
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Do you have a Lyme antibody test you can show the doctor?

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6772 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
katc
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Not really. Try to give short story.

I am 48. I got sick at 19. No one knew what was wrong, i had flu like symptoms. I was given amoxicillin and humibid. Sent me into anaphylaxis (sort of, severe pain, was told internal angiodema).

Symptoms got worse with time, numbness, tingling, a laundry list. Then docs said MS bc I had the white lesions in my brain. I called BS. Quit going to docs.

Fast forward 10 years, i found lyme disease and had almost every symptom. Went to doc and said test me, i was positive. Doc sent me to a rheumatologist who stated right out the gate it was a false positive as i had never traveled up north. Quit going to docs again. (Btw, i do not test positive anymore since CDC changed testing)

Started going to doc after doc for the past few years and it is always a brick wall. Every test pretty much shows i have nothing wrong, i am picture perfect per them at 88 pounds, yet every day is a struggle.

oh , also had bartonella henselae sequenced from my blood by a very renowned doc at a vector lab. But any bart test in a docs office is neg. So again treated like i'm crazy.

Allergic to so many meds i take nothing as i am terrified of another reaction and i am not allergic to these meds nor do i have mast cell per docs.

Sooooooo much more to tell but like everyone else here i'd be typing forever, and sorry this wasnt short after all!

Thank you for any advice

Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Get a Western Blot from Igenex.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95198 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
katc
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I would love to do that but i never have the funds to do so. Correct me if i'm wrong but i thought all those tests done outside the doctors are costly.
Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
hiker53
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They are a bit expensive but worth it so you can show MD a real positive test.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6772 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
katc
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Any suggestions on the cheapest reliable lab? Igenex is like $500 and upwards. Not able to do that. I saw western blot i think for $125 but idek what that covers and my brain is not cooperating
Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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You can get the Western Blot for about $250 at Igenex. You are probably looking at the WB plus the PCR or another test.

They probably have the IgM and IgG listed separately .. but you would want both.

Can you find an LLMD?

--------------------
--Lymetutu--
Opinions, not medical advice!

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katc
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Thank you, still cant afford that but i appreciate the help.

No i cannot find a doc. They just go off the neg test now and dismiss the bartonella being sequenced bc their test is neg. Its been a long dead end road.

I refuse to take any meds bc no one can tell me why i react so i might be shootin myself in the foot so to speak but its not fun to almost die with no reason.

Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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An LLMD will treat even with a negative test. It's the bands on the Western Blot that they base it on (along with your symptoms).

--------------------
--Lymetutu--
Opinions, not medical advice!

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hopingandpraying
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I think you will find this link to be extremely informative and you should most definitely give it to your doctor. It was written by one of the top LLMDs. I do think, however, that instead of trying to convince him/her you should find a LLMD (Lyme-literate doctor) instead to get properly treated.

"Chronic Lyme Disease: A Working Case Definition"
https://thescipub.com/pdf/10.3844/ajidsp.2018.1.44

Here are some more links for you to use:

"Chronic Lyme Disease-Symptom List"
https://sites.google.com/view/marylandlyme/symptoms

"Chronic Lyme Disease References"
https://sites.google.com/view/marylandlyme/chronic-lyme/list-chronic-lyme-references-2019

"Persistent (Chronic) Lyme Disease"
https://sites.google.com/view/marylandlyme/chronic-lyme/persistent-infection

"Late and Chronic Lyme Disease" written by another well-known LLMD

https://sites.google.com/view/marylandlyme/chronic-lyme/persistent-infection/dr-sam-donta-chronic-lyme

Posts: 8814 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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You should contact the NC Lyme Support Groups to find a LLMD. They would know better about NC.

https://whatislyme.com/lyme-in-north-carolina/

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hopingandpraying
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Here are links for financial help:

https://whatislyme.com/assistance/

http://lduc.org/lyme_disease_resources/index.html

Posts: 8814 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
katc
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Thank you so much @Lymetoo and Hopingandpraying and hiker53!

I appreciate the help soooo much!!!! I will be at the library printing and on searching for an LLMD.

Thank You

Posts: 114 | From Winston Salem NC | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
   

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