posted
I've been lurking on this board on and off for a couple of years.
I was diagnosed with seronegative RA and saw an integrative doc who put me on antibiotic therapy and basically told me I didn't need to worry about Lyme as I live in Arkansas.
I took the Zithromax for a few months and felt pretty good. I started a gluten-free diet at the same time though and have felt some better.
I then was laid off from my job and couldn't go back to see her.
Since then, I've read up more on Lyme and watched the movie "Under Our Skin" and follow this site and roadback.org. I knew that Lyme didn't have borders and thought again about Lyme as a possibility.
The job I have now has really horrible insurance, but I'm starting a new job next week. It will take 90 days to get insurance again.
Most LLMD's don't accept insurance. The closest one to me is hundreds of miles away. There just aren't very many in the South I was told.
Even so, I would have to pay out of pocket. I can't afford this.
I could get my local doc to order the IgeneX test, but then what? I've thought about buying some supplements mentioned here and trying that route.
I have lots of symptoms of Lyme. I'm sorry this is long. I'm just in tears... Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to the board, Violet. I'm sorry you have the need to be here. You're in a tough situation that many here are in, so I hope someone can help you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I might have posted this on the wrong board. Maybe it should have been posted under general support?
I'm new at posting and I apologize if I did it wrong.
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Violet, I'm so very glad you found us. I imagine many of us were writing our first messages here with tears. I know I was. :-(
It all feels very overwhelming but this is a fantastic group here and as Sixgoofykids said, I hope that someone from your area can help offer you some advice.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
Hello Violet, I, too, just posted about RA and Lyme. I was diagnosed last month with RA but a few days ago just received word from my latest blood tests that I am positive for Lyme. All my tests for inflammation have always remained negative with the exception of having a positive RA factor. I am really puzzled and anxious to see a Lyme specialist. I hope you get the help you need very soon! How about any local support groups?
Posts: 8 | From Massachusetts | Registered: Oct 2011
| IP: Logged |
posted
Thanks Cathy and Buckwheat! I do have a good RA support group, but many RA patients go the traditional route and take the immunosuppressive meds and many of them can be very defensive about their docs and meds and think you are crazy for not going that route.
I took methotrexate and Arava before my liver functions became elevated and I wasn't feeling any better anyway, so I did some research and that led me to trying AP for my RA.
Buckwheat, I'm a little bit opposite of you. My RA factor was always negative, but my inflammation tests (sed rate and CRP) were elevated.
Did you test positive for Lyme through IgeneX or your regular lab?
My regular Lyme tests have always been negative, but I have many symptoms of it.
When do you see the Lyme specialist?
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by violet01: Thank you so much
I might have posted this on the wrong board. Maybe it should have been posted under general support?
I'm new at posting and I apologize if I did it wrong.
It probably should have been in general support, but we're lenient with newbies. Some newbies are lucky to figure out how to post!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
quote:Originally posted by violet01: ...saw an integrative doc who put me on antibiotic therapy and basically told me I didn't need to worry about Lyme as I live in Arkansas.
-
Arkansas is FULL OF LYME .. they just don't know it.
Welcome!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I am sorry you had to find yourself here, and I do not have any info on doctors in your area. Have you posted in seeking a doctor yet? I also emailed ILADS and they sent me a list of doctors in my area. Then I called them all, and chose one. I have been very happy with my choice.
I do want to tell you that I was diagnosed with psoriatic arthritis, which is very similar to RA, before I got my Lyme diagnosis 6 months later. I have been infected with Lyme for over 14 years though. My rheumatologist put me on prednisone and methotrexate for the 6 months prior to Lyme.
These medications are like putting gasoline on a fire when it comes to Lyme. I was not very sick before these medications. They nearly cost me my life. I quickly became incredibly sick. My LLMD said I was one of the sickest patients he has ever had.
So I just wanted to share with you so you know how important it is to not take any immunosuppressive drugs if there is even a minute chance you have Lyme. Continue to search until you find a doctor who will take it seriously.
You can always have your primary care order Igenex testing for you as a first step. The problem with that is the sicker you are, the more negative the test results are. Lyme is a master at hiding from your immune system. The test measures your body response to the bug, so if the bug is totally hiding, the test will be negative. Mine was. The diagnosis is made by looking at your symptoms, and the test is only part of the diagnosis. Only a Lyme Literate doctor can truly interpret and make a proper diagnosis.
I wish you luck. It is a very complicated illness, and treatment is a long course. Try to find patience and determination. They will serve you well in your road to recovery. And reach out to the people on this board (and roadback also). There is a wealth of knowledge, experience, compassion, and understanding here. I do not know what I would do without the support I have found here.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I live in Montana and was told by six doctors there is no lyme disease here - not in the "lyme zone". I tested positive by CDC standards so proved them wrong! I also tested positive for erhlichia and babesia duncani. There are a lot of really sick people out there that no one is counting.
You should congratulate yourself for not taking steroids. Such a blessing you had the sense to say no. Even if you do not have lyme, it is now being theorized that auto immune diseases are not the result of an over active immune system as previously believed. Researchers are not focused on a weakened immune system that needs to be regulated, not suppressed with steroids.
You could do a trial run of doxy to see how you respond. If you herx during the first month, more than likely it is lyme. I have the same problem of being in a state with no LLMD's. After the first visit a lot of LLMDs will do a phone consult so you only have to see them in person once every 6 months.
You might be able to find a sympathetic doctor willing to help you but you will probably be responsible for your protocol as they won't know how to treat.
Another drug you might want to try is low dose naltrexone which is excellent for auto immune diseases including RA. Lyme can cause auto immune disease. I have antibodies against my thyroid. LDN boosts the immune system by increasing endorphins and this helps to regulate the T cells that call off the attack of the killer cells attacking your own body. Here is a link:
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
We live in Utah where "we don't have lyme." My daughter was bitten by a tick (which I pulled out), so when symptoms were there I kept questioning even though the doctor actually threw the tick away. I didn't know it was going to be such a long crazy battle.
You are doing well to be your own advocate and personally research and follow your heart. Positive tests are good confirmation, but be aware that they don't alway show up with a weakened immune system, or doctors use a less sensitive test which doesn't work for a lot of us. The attitudes in the medical field can be really closed minded and some are even mean. Get a doctor who has seen a lot of this (LLMD) and knows how to treat. The tragedy is that so many people can slip through the cracks and not get treatment because they trust the doctors and the tests.
As far as the expense, my perspective has changed a lot. Be willing to put out some money if you can. I think it will pay off to get into some treatment.
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
posted
If you qualify for low-income, you can get the IGeneX testing done at 75% discount through www.lymetap.com.
Some people are treating Lyme with the Buhner herbs, some because they cannot do antibiotics and some by choice.
He wrote a book, "Healing Lyme," which I suggest you get - it's fairly cheap, and so are some of the herbs - people can actually do some treating with them.
For those of you asking about steroids, yes I did take them for several months. I felt incredibly better on them, but hated the side effects. They are poison and I plan to never take them again unless it's life or death. I'm following a candida diet just because I feel I need to.
After the problems with methotrexate and Arava I decided to research and research and wanted to know WHY I had RA and not just take something that would suppress my immune system.
I wanted to know why my immune system was attacking my body.
I then came across lots of info on Lyme. I still had Lyme in the back of my mind after seeing that doc. I knew that ticks and other vectors didn't look at the state line of Arkansas and say "I'm not going to cross here" LOL! (ok gotta have humor).
The last time I checked, the closest LLMD was hundreds of miles from me. I'm going to ask again and see if there is an updated list though.
Still, I doubt I could afford to go right now. I'll just start saving my pennies and see what I can do.
My symptoms are joint pain and swelling, extreme fatigue at times, but fatigue all the time, migraines, muscle pain all over, food sensitivites, digestive issues, stiff and sore neck, rashes, and now I'm starting to have some facial twitching which worries me that this is progressing.
My inflammation markers are elevated and my vit D was low until I started supplementing. I also have hypothyroidism and take Synthroid.
I just ordered the book "Healing Lyme" off Amazon and hoping to find some supplements to start. maybe cat's claw? It won't hurt
I have to be proactive in this just like all of you. Doctors just aren't educated enough about Lyme and autoimmune diseases. I'm thankful for the docs who look outside the box though and are willing to help people.
Thanks again for all your help! Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
posted
Cat's claw could cause a herx - I was just discussing it with my doctor yesterday, so if you try it, do a small amount. In fact, it's always a good idea to do a small amount of anything to see how you tolerate it.
Teasel root tincture, along with curcumin, takes down joint swellling for me.
Fatigue can be helped with Supermalic - malic acid and magnesium.
Magnesium can help with the muscle twitching.
Just keep getting input here - there are some cheaper ways to treat -
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thanks for your help Robin :)
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Violet: It is a very sad state in Arkansas. They are in complete denial of the existence of Lyme because they are told that it's not there. Yet they report many other tick-borne diseases on their state health dept web site. Don't believe what they say, because they are in a box with their thoughts and learning. I talked to 3 people from AR 2 weeks ago who had bulls-eye rashes, showed them to their docs, and were told it was not Lyme because it doesn't exist in AR.
How's that for a crock of ignorance? It's up to folks like us to stir up a hornets nest and get some attention to the matter.
I'm sending you a PM...don't give up your fight!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Violet I'm so sorry that you have to deal with this. At least you do have a job and will have insurance.
I remember when the Lyme nightmare started, I thought there was no way out and I was very scared.
2 1/2 years later I am doing much better and recently have read Buhner's book. I think it's one of the best resources out there. I wish I had read it when I first got ill. It was written in 2005 so it needs some updates, but all in all it's great.
There is someone that you can contact on Buhners website - Julie M. that can help you with a protocol if you give her your symptoms. There is a charge but it is not outrageous.
I believe that Buhner herbs (possibly with some meds) will help me turn the corner.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
That's crazy that they don't believe Lyme is in Arkansas. I guess they missed the memo that bugs can travel.
Thanks so much Haley! Yeah, I will have insurance after 90 days. It won't help much in the Lyme world though.
Thanks for the information about the book and the contact person at the website!
I should get the book in a couple of days and I can't wait!
I hope the treatment won't hinder the blood tests.
If it does, then they can still go by my clinical symptoms and if I have improvement with the herbs then they can know that I have Lyme disease right?
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Doxycycline is a very cheap drug and what you almost always start with. It is actually cheaper to go the drug route, especially when you have insurance, than the herbal route because you have to take massive amounts of herbs to make any difference. They are expensive and insurance covers nothing.
If you also have thyroid antibodies, then for sure you would benefit from LDN, IF you can tolerate it right now. It really boosts the immune system which causes a lot of herxing. People experiencing auto immune diseases often stop progressing and some even go into remission.
The muscle twitching sure does not relate to RA. That is very much lyme disease. I hope you can find someone that will give you a trial run of doxy.
You could lie and say you were out of the state to break through their mental barrier that it is impossible for you to have gotten it. It is more important that you get treatment right now then it is that you break down the walls of the ignorant.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
Yeah, the doxy may be cheap, but traveling and paying out of a pocket to see an LLMD is not. The closest one to me is hundreds of miles away and he isn't seeing new patients.
He also doesn't take insurance.
Lyme is just too political and that's a shame.
I could see a doc in town and be treated for fibromyalgia and put on antidepressants, but to be treated with long-term antibiotics to treat the cause of the problem isn't possible around here.
My first step is getting tested. I need to have the money for that and also see if my primary doc will be on board with testing.
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
posted
something else: I've been researching Candida also and I have MANY of the symptoms of systemic Candida.
It seems Lyme and Candida can have some of the same symptoms, but that Lyme can cause a leaky gut which in terms can cause systemic Candida.
I'm concerned about long-term antibiotics in this regard. I've also been reading about how they aren't any more effective than some herbs.
I have more research to do on this and can't wait for my book to come in the mail.
This would all be so much easier if they had a better test for Lyme that insurance actually covers. We also need doctors who understand Candida better...
Posts: 17 | From Arkansas | Registered: Oct 2011
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm sending you a PM on a doctor who is a little closer and does take insurance - and he's also taking new patients:)
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[Eek!]](eek.gif)
![[hi]](graemlins/hi.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic