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Posted 1/18/2012 2:31 AM (GMT 0)
I was diagnosed with Hashimoto's disease a little over a year ago. Lately my internist found that I have borrelia valaisiana. I never had a bullseye rash and never saw a tick. I don't know how I got this. I'm not sure with the symptoms I have if they are attributed to the Hashi's or Lyme. I don't know if I should take antibiotics. I don't know where to start or what other testing if any I should do. Can someone please help.
Posted 1/18/2012 4:33 AM (GMT 0)
Hi Minnypurl,

What are your symptoms? How did your internist come to a Lyme diagnosis? Did he give you any plan for where to go next?
Posted 1/18/2012 4:52 AM (GMT 0)
What is borrelia valaisiana? Is it a strain specific to a certain area?

Anyway, that's not really that important- I was just curious. How did your internist find out? Where do you live?

Symptoms of Lyme...gosh, there are a million, but Lyme can CAUSE thyroid problems. Also joint pain, muscle pain, fatigue, vision problems, memory problems, "brain fog", dementia-like symptoms, anxeity, depression, nerve problems (peripheral neuropathy, pain, burning feeling in extremities etc.), tendonitis etc. etc.

Many lyme patients never see a tick, or see a rash. Testing isn't great, so I don't know if it is worth doing unless a doctor asks for it.

You should try to find a lyme-literate doctor. If you are in the US or Canada, or to ILADS.org (international Lyme and associated diseases society). They have a list of doctors trained to treat lyme disease.

And I would also recommend to keep googling and doing your own research. I know doctors might disagree, but this is a very confusing illness, and you can't trust doctors to give you all the information on it. The more I knew when I was first looking into it, the more I felt comfortable with moving forward with antibiotics and an LLMD
Posted 1/18/2012 2:00 PM (GMT 0)
Minnypurl,

Welcome to the forum! Glad you found us.

It's great you have a doctor who is so well informed!

I would like to echo the good advice you have been given by Zeusy. Borrelia valaisiana can produce all the damage that Borrelia burgdorferi can, so your doctor is absolutely right about putting you on antibiotics. You could well see your Hashimoto's be resolved by treatment.

Have a look at our "New to Lyme?" thread at the top of the forum. It has information and resources that will be very helpful to you.

I am assuming you are in Europe, so you would be able to find help at the canlyme.org site. They have an international section. Also, eurolyme.org will be of help.

Please come back to us with any questions you have.
Posted 1/18/2012 3:48 PM (GMT 0)
I live in Louisiana. I do not live in Europe. 

I have read through some of the info on the new to Lyme forum.  I am just wondering if this disease is curable.  It doesn't look like it from the reading on the internet that I have done.  I really don't want to play around with rounds of antibiotics that may not even work.  I am a pharmacist and I know that antibiotics can also be hard on the body.  I have been pretty ill for the last two years.  I just found out about a year ago that I have Hashimoto's.  I was attributing my poor health to the Hashi's.

My doctor gets a lot of negativity from her colleagues in town because she does a lot of testing.  If it weren't for the testing I would never know that I have hashi's or Lyme.  I was being treated for Hashi's and still feeling awful even after following all of her recommendations closely(gluten free, sugar free, alcohol free,caffeine free diet).  She tested me for Lyme at that point and I laughed thinking the test was unneccessary because I really never even go outside.  Well sure enough the Western Blot came back with a positive P41 antibody.  She told me that I may want to do another test called the Spirostat test(PCR test) that tests for spirochetes(25 types plus Babesia).  I did that and it came back positive for Borrelia Valaisiana.

Currently, my doctor is contacting the doctor that developed the Spirostat test to find out which antibiotic works best for my strain.  I am thinking I will be on some type of antibiotic for at least a month.  Then I guess I retest.  I am also going to work with a Holistic nurse to use natural treatment along with conventional.  Right now besides the Armour thyroid, I am on 25mg iodine daily and 30ml of colloidal ionic silver daily(also taking daily multivitamin, calcium, etc).

Any additional info would be helpful.

 

Posted 1/18/2012 4:48 PM (GMT 0)
Hi Minnypurl!
Welcome to our place! I'm so sorry to hear that you have a need to be here, but I'm sure glad you found us!

At this point in time, the studies show that even with good treatment and the patient goes for years without any symptoms, upon autopsy - when one was done - spirochetes were still found in the brain, although they weren't able to reproduce. So the word "cure" is a tricky one! The goal of any treatment for most any disease is to stop progression and to resolve symptoms and that can be done with Lyme as well. I would guess that remission is a more accurate term.

The reason members were asking if you lived in Europe is because you have what is currently considered an European strain of borrelia.

The fact that you never saw a tick or saw any kind of rash is not uncommon. Ticks are not the only vector of this disease any more. Fleas, deer flies, horse flies, mosquitoes and other biting insects all have the potential to be a carrier now - it's that prevalent.

Please do keep in mind that each person's treatment must be tailored to them - that's because of the way Lyme attacks the body. It goes after the weak points first, and we all have different weak areas in our bodies, although given enough time and opportunity, it will eventually infect every part of the body. This generally takes many years though.
Posted 1/18/2012 6:53 PM (GMT 0)
Well, my next question is- am I on the right track of attacking this thing? I guess I will be started on oral antibiotics for about a month and natural healing herbs,etc as well. Is there anything else that I need to consider to get me to possible remission?
Posted 1/18/2012 7:05 PM (GMT 0)
Detoxing!! Are you detoxing yet? This is generally something that all must do in order to heal. We have a great post about detoxing in our "New to Lyme?" thread. It's the second post, and detoxing instructions start about 1/2 way through.
Posted 1/18/2012 7:51 PM (GMT 0)
No, I haven 't done any formal detoxing yet. I just hate the thought of feeling worse again and still having daily chores and work to attend to. I guess I can start with the baths.

Haven't even started Abx yet.

I read somewhere that some docs have suggested staying on Abx until 2 months after feeling better??? Any thoughts on this?
Posted 1/18/2012 9:12 PM (GMT 0)
Hi again Minnypurl,

Detoxing even the simplest methods can not only help your symptoms but help lessen the herxheimer reaction.

And there's nothing like a nice warm bath to make anyone feel better!

The more you can keep the toxins produced by the bacteria (and by their die off when you start treatment). the better you will feel.

Yes, it is recommended that you continue abx until after 2 months after symptoms cease for infections established for months or years. We have heard plenty of stories of people who have gotten off abx too soon, only to have the symptoms return soon. You want to be fully done with it so it doesn't come back.
Posted 1/18/2012 9:22 PM (GMT 0)
Does anyone know or have experience with the antibiotic rotation protocol?
Posted 1/18/2012 9:36 PM (GMT 0)
Minny..ask your doctor if she has heard of the metametrix stool test for parasites. it is known to be the best. ticks carry parasites that antibiotics do not kill.
I wonder how much other lyme she has come up with in testing her other patients. No doctor tests and tests for nothing. She is probably on to something like people walking in and out of her office with all the same unexplainable symptoms.
This is how the seriousness of lymes really gets known. One lone doctor starts to follow a trail and is really looking for answers and not just
misdiagnosing and writing prescriptions for prednisone.

keep us posted
Posted 1/18/2012 10:24 PM (GMT 0)
If I were to believe my other physicians I would think she is a quack. She told me she has been finding a lot of her patients with Lyme and Babesia.
Heck, my endocrinologist told me if I'd talk to a counselor I would get better. I have Hashimoto's too and I was hypothyroid at the time. That, to me, is a quack. He is considered one of the best in town.
My doc is familiar with the metametrix test. It's just another thing I will have to consider on this long road ahead of me.
Posted 1/18/2012 10:32 PM (GMT 0)
Can anyone help me?  I click to unsubscribe to emails by accident from healingwell.com.  How do I fix this?
Posted 1/19/2012 12:21 AM (GMT 0)
Hi Minny,
That is a thread by thread thing. You can re-subscribe just by clicking "subscribe to this thread" right above the very first post in each thread.

Also I would like to point out that Hashimoto's is a disease, and Hypothyroidism is a condition. Hashimoto's causes hypothyroidism. Here is a link that has more information on this. I couldn't get it into a hyp[er link, but if you'll copy and paste it into your browser, it's still a working link.
http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm
Posted 1/19/2012 12:50 AM (GMT 0)
Thank you.

I do understand the difference between the two thyroid issues.

I have found www.stopthethyroidmadness.com to be the best website (and book) that I have found in a year's worth of research on thyroid issues. It has helped me more than I ever could have imagined. Now my goal is to try to fix the Lyme.
Posted 1/19/2012 1:21 AM (GMT 0)
I like that site as well, I learned a lot about my thyroid issues there too. I do love the learning possibilities that are open with the internet! And the online support as well!! smilewinkgrin

Just remember, it's your choice how to treat these infections - with abx alone, abx and herbs, or with herbs alone. There are those that say the rife machines work well too. I don't know enough about that to be able to say anything intelligent, so I won't say a thing. Giggle! Anyway, we are here to help provide some information to help you decide which route would suite you best!

Hmmm, somehow I feel like that last sentence didn't make much sense. I guess I'd better get off of here for the night! LOL!
Posted 1/19/2012 4:21 AM (GMT 0)
I think I will try the Abx with herbs.

I would also consider hyperbarics and other alternative protocols.

Does anyone have any experience with Reiki for Lyme?

Good news, I contacted ildas.org to find a LLMD for Louisiana. There was only one about an hour and a half from where I live. So at least I have an option for some knowledgeable help. My internist is very good about consulting more knowledgeable sources when she needs to.
Posted 1/19/2012 8:50 PM (GMT 0)
Congrats on finding a LLMD! The fact that s/he is so close is really great as well!! Hopefully your LLMD will be willing to treat with herbs as well as abx. You may want to call the office and ask some very pointed questions. We had a great thread going for a bit that asked the question, "what to ask LLMD's?" - I'll bring that back up to the top of the forum in case you would like to see it.

As for your question about Reiki, I would suggest that you start a new thread so that others can see the subject.
Posted 1/19/2012 10:57 PM (GMT 0)
ok, thanks. I just heard back from my internist. She spoke to a naturopath from San Angelo, TX. She wants to treat me with silver, cemento, cumanda(forgive spelling we only had a phone conversation). I'm not sure of the total protocol, but she will be getting it to me by Monday. She also told me that she has sent patients to the LLMD that I found and has worked with him also. Things are moving along. I'm so glad I found this site!
Posted 1/21/2012 3:48 PM (GMT 0)
Sounds like progress, Minny!! Congrats! Be sure to learn about the meds that you are being told to take. If you know what they are for, you'll have a better understanding of what to expect.

Be sure to let us know how things go!!

We're glad you found this site too!!! smilewinkgrin
Posted 1/21/2012 4:46 PM (GMT 0)
If anyone has had experience with same to and cumanda please let me know your experience or results. I've read that it is possible to have some gi upset(diarrhea).
I was told the Herx reaction was not as bad with this protocol using mesosikver, cumanda, and samento.

Question:I have an appt. with my ophthalmologist soon and I wanted to know if there is anything he needs to especially look for with Lyme.
Posted 1/5/2015 4:30 AM (GMT 0)
Hi! How are you doing? I have found one LLMD in Louisiana but he is 5 hours away from me and the waiting list is 6 to 9 months long. I have already been blown off by my GP and an ID. If you have learned anything I sure could use the help too! Take care!
Posted 1/5/2015 3:46 PM (GMT 0)
Cajuncootie,
this thread is several years old and this member has not posted since this last post.
Posted 11/1/2015 9:12 AM (GMT 0)
Minnypurl or other Louisiana, Texas, Mississippi, Arkansas members:

Can you please share the name of your doctor? I need help with multiple viruses, candida, and possible other weird stuff because I have felt horrible for past 2 years and the Louisiana doctors I have visited are stuck in virology and pharmacology 101 from the 80's.

PLEASE help me and others by sharing the doctors' names that can hep us.

Thank you!
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