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Author Topic: Need Advice
lindadanis
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I was diagnosed with babesia along with lyme in February. Many of you has seen my recent posts and I was just diagnosed with rheumatoid arthritis also. Haven't been put on any meds yet as that doctor wants me to update all my vaccinations and I am nervous to do so. I called my llmd and told her and she told me to update them and go on whatever meds they put me on and she took me off Doxy and Ababs that day and said to call her in three weeks. This left me very confused as to why.

I have terrible lyme fog, anxiety, shortness of breath, sweating, and many more symptoms to long to list. Also headaches every single day that never go away.

Should I continue with this doctor or should I look for another one. I do not understand why RA has anything to do with being treated for the lyme and coinfection. I actually thought maybe there was a connection between the two.

Any thoughts would be appreciated.

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Lyme248
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Update your vaccinations? That sounds weird.
I don't see where your doctor is going with that, unless you are actually at risk for tetanus or shingles or whatever there giving the vaccine for.

Probably even if you did have RA it seems like your doctor would want to ignore it for now and focus on treating the Lyme and babesia.

It sounds like maybe your doctor has just run out of ideas and maybe you should start looking for another one.

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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Lymetoo
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She may be thinking that you are dumping the idea of having Lyme and babesia.

Many times the Lyme is causing the "RA" .. so I don't know what to tell you.

Do you think she is just miffed?

I wouldn't want any vaccinations myself.

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

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lindadanis
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When I told my llmd that the rheumatoid doctor wanted me to get the tettnas shot, sorry I am sure I spelled that wrong and the pneumonia shot, she said do it and go on whatever they want to put you on and stay off the lyme meds for at least a while and get the RA treated. I asked her why and she replied " well you don't feel well and the doxy and ABABS haven't done much, so treated the RA and we will revisit the lyme and babs down the road". I hung up and was very puzzled. She sounded sick and actually was going on vacation for a week. I always thought that lyme patients should not take any vaccinations. Am I correct or wrong?

I was only diagnosed by her in Feb. She first put me on mepron and zith but I got dizzy from the zith so she added doxy and Ababs., then she took me off the mepron, don't know why.

I feel like I was not treated long enough to feel better yet she seemed to think so. I am now wondering if I am wasting my time with her and also what am I going to do about these shots. The RA doctor will not treat me until these shots are done.

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lindadanis
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My igenex test showed babesia duncani 40 barely positive, just over the border of normal and my lyme test not through Igenex showed bands 58 and 34 and another one I do not remember. Any thoughts on these test results. I do not know why my lyme test was not ran through Igenex.
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Lymetoo
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Big sigh!!

Do you trust this RA doctor? I guess he is following the "party line" of his hospital affiliation. I refuse all vaccinations. I don't need more trouble.

Maybe you can find another doctor? (on both counts)

Are your RA tests clearly positive?

http://www.roadback.org/

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

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lindadanis
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my RA test are positive however I am doing more blood work tomorrow per the RA doctor. My sed rate was high and the RA was high on the initial testing. I do not know this doctor at all so don't know if I trust her or not. I was referred to her by the neurologist who did the original testing. I do know that I do not want to take any vaccinations and not sure why I have to before starting any RA medication.
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map1131
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I second what Tutu said. Drop the Rheumy doc. Find another LLMD.

This advice you are getting from this so called LLMD is very puzzling to us that have been in Lyme world for many years.

High sed rate is pretty normal with Lyme. Positive RA is fairly normal with Lyme. Inflammation is always with Lyme and Babesia.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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She is recommending the vaccinations because her company or group practice is making her do it. Bottom line: money for them all.

I agree with map. Find a new LLMD.

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

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=131625;p=0

VACCINE INGREDIENTS - Informational Links set
-

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Keebler
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I agree with others on all points. Please review the replies about RA in your previous thread. There are many posts / links there that explain why the SED rate, inflammation rates, and rheumatoid tests are high / abnormal

and the risks of some of the standard treatments for "RA" when the cause if it (lyme, et al) is not considered. Often prescribed are Biologics and Steroids. Both have links, extensive detail for you in previous threads.

Just click onto your name, search previous posts and even then just the threads you started to find this detail.
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Keebler
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And, it matters not if this so-called LLMD did well previously with other patients as at least one person here has posted about her.

What you describe now is not acceptable - in many ways. . Sometimes, a good LLMD will have political and employment superiors' pressure to not practice as they may have before.

And, your case might just be too challenging for her and she would rather have the responsibility transferred.

If she is with a practice of other doctors, she may be required - yes, required - to push vaccines. She also may be required - yes, again - required to not tell you of the risks to someone whose health is so challenged in various ways.

The documentary "Under Our Skin" explains how some doctors can be pressured, and forced by either their state or federal doctor groups.

She may not even be allowed to tell you more. When some doctors get silenced, they are very limited in what they can do. I don't know if she has been silenced but do connect with your area lyme support groups to compare notes for the current time, not years ago.

And most LLMDs strongly suggest not getting a vaccine due to the fact that your immune system is already topsy turvy. Vaccines can turn that into a tornado, to speak. Detail in the Vaccine Ingredient thread.

You need to find areal ILADS -trained LLMD or one with the same knowledge of the science of lyme, babesia, etc.
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/136925?#000000

Topic: neurology workup

You posted this thread on April 23 of this year

Review the replies as they should help clarify and explain why we all are saying what we are saying.
-

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lindadanis
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I am now more confused: if SED rate and RA rates are usually higher than normal with people with lyme,

then why would my llmd tell me to take the appropriate vaccinations that this RA doctor is telling me to do prior to putting me on a cancer treating drug that is commonly used for RA patients????/

I told my llmd everything and she said continue with this doctor, do whatever they want and take the medication and call me in three weeks to let me know whats going on.

She has been treating lyme for over 20 years and has a very good reputation. Doesn't she know that these factors are seen high in many lyme patients. The only thing that alarmed me was I remember her telling my daughter 10 years ago never to get a flu shot and she never has.

I am going to cancel my follow up with this RA doctor, do nothing for now except take a motrin for the pain and swelling in my fingers. thanks for all the help.

(breaking up the post for easier reading for many here)

[ 06-01-2018, 04:59 PM: Message edited by: Robin123 ]

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Keebler
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Call your local lyme support groups. Connect with them.
-

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Keebler
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-
https://www.amazon.com/How-Can-Get-Better-Resistant/dp/1250070546

How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease

February 14, 2017

By Dr. H, an ILADS minded LLMD

You can look inside the book here, scroll down from cover page to see table of contents. Also see over sixty reader reviews.

Here is a presentation just over a year ago:


https://www.youtube.com/watch?v=BZu0wEOFVM8

Dr. H - 2017 Lyme Conference - Southern Tier Lyme Support

Presenting ideas from his latest book

Video: 1-hour & 52 minutes

April 29, 2017


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/136070?#000000

Topic: Dr. H. 2017 Talk, Ideas from His New Book-
TF posted on June 22, 2017

TF says: just took notes of things that were new or of interest.
-

[ 05-30-2018, 06:53 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/ubb/ultimatebb.php/forum/2

"Seeking a LLMD" forum


https://www.lymedisease.org/

Lyme Disease.org - a top patient education organization

https://www.lymedisease.org/find-lyme-literate-doctors/

Connecting Patients with
Lyme Disease and Tick-Borne Disease Specialists
-

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Keebler
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http://www.ilads.org/lyme_programs/conference-videos.php

ILADS - Conference Video Gallery -- just one of many good one from this collection:


https://www.youtube.com/watch?v=gWtz_HLy7rc

Clinical Evaluation and Treatment of Lyme Arthritis

By Dr. G -- a 4-minute video segment. Full DVD for purchase.

Perhaps some lyme support groups might have a library of materials for loan.

&

https://www.youtube.com/watch?v=yt8Tnr4aTTk

An 8-min. "Behinds the Scenes" Interview with her.
-

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sammy
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It's reasonable to think that you are due for your routine TDaP booster. Same for pneumococcal vaccine. And the new shingles vaccine is far more effective than the previous ones.

It sounds like you do have a good, reputable LLMD. Think she might be willing to work with the Rheumatologist to get you to a more stable overall condition?

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Told you I was sick
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PM sent to you, lindadanis.

Best,
Told you...

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lindadanis
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thanks for the replies. My llmd is on vacation at the moment but she did say to do whatever the RA doctor wanted me to do and go on plaqinal if they suggested which they did. I will talk to her when she returns from vacation. I am thinking of doing the tettnus shot and the pneumonia shot as suggested by the RA doctor and get on the medication. I can barely use my fingers, they are so swollen and hurt. I need to do something soon.
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koo
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After reading your initial post, I think I understand why they are asking you to get vaccinations. It sounds like you will go on a protocol for RA, which will compromise your immune system, hence the request for vaccinations.

The bigger question is whether this is RA or lyme arthritis. Was just your sed rate elevated or was your rheumatoid factor also elevated?

I would get all this sorted out before I proceeded with vaccinations, and even then I'm not sure I would proceed with them.

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Lyme248
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I also had trouble with swollen fingers. For me it usaully came with a rash, and it always started on my ring finger. For a while it was so bad that I couldn't write.

I think it's a good idea to figure out if it's being caused by the Lyme. When your fingers are more swollen, are your other symptoms worse?
Or are your fingers swollen all the time?

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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Lymetoo
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I thought sed rates were often LOW in Lyme patients.

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

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Keebler
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-
http://lymemd.blogspot.com/2009/02/why-i-cant-stop-treating-lyme-disease.html

LymeMD blog

Tuesday, February 3, 2009

To not treat Lyme disease means....

A 28 year old female came into my office 18 months ago. She complained of acute left hip pain for 3 days and was unable to walk.

My previous training told me that it was something called "toxic synovitis," an acute joint inflammation or a hip joint, possibly do to a virus or a rheumatological disorder. She was in severe pain . . . .

. . . Her initial labs showed a SED rate of 32

a CRP of 160 - which is off the charts,

[poster's interjection: CRP is C-Reactive Protein, another marker for inflammation]

a Lyme C6 peptide index of 0.3, vitamin D reversal, a Lyme WB 41 band on the 13 band test.

She took antibiotics for 2 months for presumptive Lyme disease and got better.

She stopped the antibiotics and relapsed 4 months later. This time her hip and knee hurt. She had mild neurological signs of peripheral neuropathy. . . .

. . . "Standard" labs were negative for Lyme. Her SED rate was 47 and her CRP 30. . . .

[Full blog entry at link above]
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Keebler
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SED Rate is just ONE marker for inflammation. There are other tests as well. And if one knows there in inflammation and it's very apparent - well, then - there is inflammation.

Still, inflammation is a symptom, not the cause. Inflammation has many causes, of which infection most certainly is one.

Search the literature to see what ILADS LLMDs or the like have to say about it.

While may good replies are usually here in any given thread, do not use them as your sole guide. They are just a beginning.

It's also best to then also see - in print - or in video directly by key LLMDs or ILADS websites, LymeDisease.org websites

what they say about all this. The Dr. G. video segment would be one to follow up on to see if you can locate the full presentation.
-

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lindadanis
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my SED rate was elevated and my RA factor was elevated. Yes they are swollen most of the time and they hurt. I have been taking advil and that seems to help a lot. I have not taken any vaccinations yet as I am very hesitant to do so. I do not want to compromise my body any further. I asked my llmd if this was connected to lyme and she said NO.
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map1131
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Linda, I used the search feature on this site to find this info for you. Lots of reading for you.

I searched RA- 1000 matches (lymenet will only pull up 1000 threads that match) since '17. So tons of info from others in the last 1 1/2 yrs on RA. There would be no need to threads about it unless it effected many of Lyme suffers.

I search SED- there were 1000 matches going back to '12.

I hope this reading helps you with your future and treatment. You are in charge of your health and well being. The person in the white coat is a tool for you to use. It's you health, and you are the one that is suffering.

Take care of you,
Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lindadanis
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thank you all for helping me out with these posts. I did go on the search button and read up on sed rates and ra issues and wow, there were a lot of them to read. I see the rheumatoid doctor next week for results of xrays, more blood work, etc. I know they are going to want me to start a med but not sure if I am. I believe this is because I have lyme and babesia and do not agree with my current llmd, that they do not have nothing to do with each other. I am hurting for sure, my fingers are very swollen and hurt all the time. I do not know what to take for it so right now I am suffering through. I am also looking for a new llmd. Even though she treated my daughter 10 years ago, and successfully, I feel like she is not in this 100% anymore and I need a doctor who is really going to help me from start to finish. I am not new to lyme disease since I dealt with this many years ago with my daughter, who is now a healthy 30 year old woman, and I also did not agree with her taking me off all abx and herbal stuff last week. She told me " get off the lyme meds and go deal with the RA stuff and meds and call me in three weeks".
I thought it was very odd that she did that. So I have started back on the doxy and ABABs last night until I find someone else to treat me.

I wanted to thank you for all trying to help me out. This anxiety, shortness of breath, terrible sweating, pain everywhere has to be from lyme and babs. I know I am not going crazy, its the disease that is.

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Bartenderbonnie
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lindadanis

You are not going crazy. . . You are unfortunately in the Lyme Maze.

IMO, I do not think the mainstream rheum doctor is going to help you get well, unless they are ILADS trained.

Most LLMD's know that many Lyme patients have high rheumatoid factors.

According to Dr H in NYS ;

" Patients often devlope rheumatoid factors with Lyme as a result of an overstimulated immune system with rheumatoid factors."

"Therefore, the mere presence of rheumatoid factor in Lyme disease patients does not immediately indicate the presence of rheumatoid, that can determine a true diagnosis of rheumatiod arthritis."

"CYclic Citrullinated Peptide ( CCP) is a very specific marker for rheumatoid that can determine a TRUE diagnosis of rheumatoid arthritis."

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Bartenderbonnie
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Linda

More help for you ;

https://rawlsmd.com/lyme-support/page/6

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Bartenderbonnie
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More info :

https://sites.google.com/site/marylandlyme/tick-borne-diseases/babesia

Found it, ha ha.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/135799#000000

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lindadanis
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thank you so much. I just read it and yes, I have almost every symptom on it. very scary.
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lindadanis
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I actually did more labs and one of them was CCP so that is good. You said that is a true marker for RA so I will see this doctor next week and see what she has to say. Thanks again.
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lindadanis
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talked to RA doctor today, my ccp rate was normal and my sed rate fell from 47 to 33. she did say that the xray showed two kinds of arthritis, one being RA and suggested I go on plaquinal. I have retina dry eye issues going on due to my grave disease acting up and she said plaquinal can cause retina issues down the road. I told her I would talk to my eye specialist and get back to her. What do you think of these results? is this all from lyme and if so, why doesn't my llmd think so?
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Lymetoo
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I just don't know, Linda. This is the same RA doctor, right? Not a second opinion?

I wish you could find out more from another LLMD.

Plaquinel is used by Sjogren's patients, but they DO get an eye exam beforehand and discuss it with their eye doctor before proceeding.

Maybe the plaq will help you with the babesia .. add some biaxin or macrolide.

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

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lindadanis
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I just spoke to my eye doctor and he said it was fine to take it. He is an eye specialist that has been following me for years. Yes this is the same RA doctor. I see her in two days to discuss. I thought the CCP test was more of a definitive test to determine whether you really have RA or not and mine was within normal ranges, however she said the xrays reveals that I do, in fact, have RA. I will try it I guess and see how I do., but will follow up with my eye doctor in a few months as he suggested.
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Bartenderbonnie
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I don't know Linda.

That's why Lyme patients have LOTS of different doctors.

We constantly are looking for answers. Sometimes we get answers, sometimes we don't get answers.

But we NEVER stop trying. Stay in the battle.

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lindadanis
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thank you very much. I will stay in the battle no matter what. I am a fighter all the way.
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sammy
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I've never had any of those blood markers show up. You should follow up with someone so they can monitor those levels & symptoms. RA can destroy your joints fast.

I've taken plaquenil for Lyme treatment off & on. My doc requires an OK from my eye doc before starting it. Then you follow up every 6 mo.

I've had a thinned retina since a childhood accident so my eye doc is a retina specialist. Plaquenil didn't cause any harm. Dose was the standard Lyme one so you may have been prescribed a higher dose.

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lindadanis
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I haven't been prescribed plaquenil yet but will be today. going to the RA doctor this morning. I did talked to my eye doctor and he said it was fine to go on it, he wants to see me in two months to check my eyes. I am hurting, big time, especially my fingers. they are swollen and very painful so I have no choice but to treat. I have a constant headache everyday and I believe this is caused by babesia and terrible night sweats as well. I don't understand why my llmd took me off meds and told me to go deal with the RA and call her in a few weeks. I am suffering terribly.
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lindadanis
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Not a good day at all: saw RA doctor, put me on 400 mg. plaquinal for RA. Went to pcp, feet and legs swollen, sent me to hospital for an ultrasound to rule out dvt's, blood clots, venus insufficiency, tech. said it looked good., won't know for sure until tomorrow. Bp was 200/88 in pcp's office, very very high for me. Increased my coreg to double the strength. What the hell is going on with my body? This crap all started a year ago when I fell ill. Is this all related to lyme and babs or am I running into all sorts of health issues? woke up in a complete drenching sweat, headache, anxiety. you name it, I have it every single morning.
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lindadanis
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Oh and lets not forget the biggest problem I have: feeling dizzy/rocking on the boat feeling all day. Try to explain this to your pcp. and to top it off, they ordered a stress test for Friday. How the hell am I doing that feeling this way?
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sammy
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Your doctor is just trying to make sure that you do get the very best care.

Infections can cause all kinds of problems with the body, sometimes they need to be taken care of or better controlled before antibiotics can safely be administered.

I would strongly urge you to call your doctor/ llmd/ pcp / ra to clarify the overall plan for your health. It’s important for you to understand. You are an essential part in your healthcare team. Don’t be ashamed to ask questions.

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sammy
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I was hospitalized for vertigo for over 5 weeks a couple years ago.

It was so bad, I literally couldn’t stand up without someone holding my whole body upright. I had PT multiple times a day & no matter what we tried I’d immediately smack the floor!

I had every advanced imaging test imaginable. Tons of bloodwork. Lumbar puncture. Saw great neurologists. Worked with PT, OT, tons of curious residents...

My chiropractor friend even visited several times to try to help.

They eventually determined that I was suffering a type of post viral syndrome.

Sadly, it made complete sense. 3 days before the vertigo syndrome started, I’d had a childhood virus.

Because of my immunodeficiency (CVID), all my rare infections & severe complications, the most respected clinical immunologist in the country accepted my case. That was a scary time & I would have died without her help.

Thankfully my parents fought to bring me home from the hospital, docs didn’t want to let me go. My family & some close friends hade to go to the hospital & agree to be fully responsible...

My dad carried me into the house & they asked me to never get up on my own. I was so happy to be home! Of course I still had PT & OT all the time.

It took me a full year before I was able to lean on the wall & walk down the hall on my own. First time I did it I was so thrilled! Independence! Sounds like forever but it went fast.

Gradually I learned to compensate & kind of tolerate the effect of the vertigo better. With determination I learned to walk down the hall alone without touching, then on & on. I rarely have vertigo now. Being stuck in large crowds & driving down long stretches of boring/ endless road can trigger it to come back.

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sammy
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I’m sorry that ended up being so long. I just get the sense that you’re feeling overwhelmed & like you’re the only one who’s suffered from numerous crazy conditions.

My friend, please look at some of the stories of our long time posters like myself, Rumi, Maps, Silver, randibear....... maybe you’ll not feel so alone.

You know, lots of people do get better, that’s usually why they stop posting! Some come back and share success stories, read those!!!

Hang in there friend. We believe you.

Be confident when speaking with your doctor. Remember, they are not a superior, you have an equally essential role!!!

Speak clearly. Look them in the eye. Don’t get emotional & don’t throw in unimportant details. Write down a (3-4 max) of the most urgent & important things that you need the doctor to address. Give the doctor you list after they greet you.

If the above sounds difficult, practice in a mirror. Until you’re comfortable it might be good to have a friend or family member go with you to help be your advocate.

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sammy
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I almost forgot, you might ask your pcp if it might be safe for you to try meclizine & or Ativan.

Meclizine is an antihistamine & Ativan is an anti anxiety med. They are both well known for helping with vestibular problems.

They didn’t seem to help at all at first but my doc was able to adjust dosages slowly over time & we found what really helped.

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sammy
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Your pcp needs to do imaging to at least rule out deep sinus or ear infections.
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lindadanis
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thank you for posting to me. I am on Ativan, have been for a year when this crazy nightmare started. I have actually cut back from 3 mg. day to 1 so I don't think its that. I am going to an ent doctor soon to have my ears checked. I have had several CT's of my head and nothing has shown up. I didn't have this serious off balance stuff until I started lyme meds back in February and it got worse even though right now, I am off all lyme meds. My daughter back 15 years ago had chronic lyme and her biggest issue was dizziness so I am not new to the lyme world. She has fully recovered and is so much better, now 30 years old and getting married. I believe mine is all caused by babesia, when I looked it up, I have the terrible night sweats, headaches, dizziness, and I came up positive for it in February. Now my blood pressure is sky high, my feet are swollen and they are now running tests to figure this out. I appreciate your advice and I am not intimidated by doctors at all. I am very use to dealing with them, however, it gets so frustrating when you still feel like crap a year later. I am happy to hear you are better.
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lindadanis
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I did see the RA doctor yesterday and she put me on 400mg of plaquinal for the RA to see if it would help.
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