posted
Last week I was, finally, diagnosed with Lyme disease. I have had it for over 13 years, but never had a proper diagnosis. I think I am still in shock, however nothing has made more sense to me for a very long time. I am sure my story has been heard a zillion times before, doctor after doctor, misdiagnosis after misdiagnosis, many medications, symptoms, and years later as I am losing functionality in my life, the light has been turned on, and here I am. I wanted to kiss my doctor when he told me! He was quite perplexed by this, as Lyme is not usually a welcome diagnosis.
Anyway, I am just trying to learn all I can and am wondering if anyone can point me in the direction of good books, or info, or anything. Like I said, I am just beginning to start my journey. I started treatment this week. My doc is having me start with a few different homeopathic medications, trying to minimize any herxing. So far, I feel crummy, but nothing I can't handle. Next we will move on to heavier medication. Not sure what that is going to be, but I think is will be a combo as he is a Naturopath and I think I will request abx as well.
Anyways, any info, tips, or anything is greatly appreciated.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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First, I recommend reading Dr Burrascano's treatment guidlines several times as it it the "bible" to treatment in my opinion.
A great book is Cure Unknown, to fully understand the controversy of the disease and the different schools of thought for treatment.
Another good book is by Dr. S, The Lyme disease solution. Discusses the pathology of lyme and symptoms of coinfections and appropriate treatment. DIscusses diet, alternatives, supplements. Very easy to read.
posted
I don't know about books but I would say that this usually is a long process, filled with ups and downs, but with a good doctor, support, eating well, supporting the immune system, and not being afraid of the treatment (when it begins to get rough), you'll probably do just fine.
I'm glad you've finally gotten the proper diagnosis! I know what you mean by wanting to kiss your doctor. I felt the same way. Though now that I'm in the trenches I realize how totally unaware I was about this disease and what it's like to heal from it.
But I still thank God He kept pushing me to hound my doctors for the test and that I found a great LLMD!
Welcome and you'll find so much support here.
Posts: 256 | From Texas | Registered: Jun 2010
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posted
Thanks for the info! I am printing the book right now. As for wanting to kiss my doctor, I wish I did not Lyme, of course. But I was told that the autoimmune disease that I have was going to leave me on toxic medications and unable to walk because of the pain for the rest of my life. I know my road is going to be a long, probably difficult one, but now I have hope that I will get heathy. Hope is something I have not had for a very long time.
posted
Autoimmune?? Do you mean Lyme or something else? Lyme disease is a bacterial infection.
I hope you will be able to get well under the direction of a naturopath. I guess if you have a good one, you can!
Finding out we have Lyme is a mixed blessing/curse. The good news is that you can now begin your journey to getting well since you finally know what has been making you ill!
It took me years and years before I was finally diagnosed. I am doing very well now, Praise the Lord!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yes, I have an autoimmune disease (psoriatic arthritis) that is caused from the Lyme disease. Its such a tricky bacteria, that it sent my immune system haywire. But the doctor has total faith that once the bacteria is gone, the autoimmune will calm down as well.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is this ND ILADS-educated? Are you absolutely sure? Positively?
There are some NDs who THINK they know about lyme, say they treat it but are 95% clueless.
There are also a few good ILADS-educated LL NDs in the Pacific NW. Having two colleges of naturopathic medicine (one in Seattle, WA and one in Portland, OR) helps but only to a certain extent.
I can't tell which state you are in so can't guide you other than to be 100% certain the they are ILADS-educated and ILADS-member, even if they practice a bit differently.
I wasted five years of my live with a L.Ac./Ph.D. who practiced similarity to a ND. He SAID he knew all about lyme and other infections but his treatment fell far, far short.
At that time, there were no ILADS-educated or ILADS-members NDs in Oregon yet. He had been my only option. I should have moved out of state to find a real LL doctor, whether MD or ND.
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
** Compare the literature:
Includes many articles and books on complementary / integrative methods - & RIFE links.
===========================
There are no LLMDs in Oregon but there are a few LL NDs. And a few who think they are but are not. This group can help guide you if you live in Oregon: ---------------
CALIFORNIA Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
============================
I don't have the Washington State or the Idaho State support groups but, if you live in either of those states, be sure to find those. -
[ 10-06-2010, 07:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is this ND willing to use antibiotics? If not, you need another doctor. You said you think he may move on to abx but you need to KNOW for sure that he is completely educated in lyme treatment from all angles.
Would he be willing - and is he trained in IV treatment? Would he consider IV antibiotics &/or IV garlic? In Oregon, NDs are licensed to prescribe all Rx but only a few ND are trained in IV treatment. At least one LL ND whom I saw is.
She recommended that I be on IV abx for many months. I just could not afford it. But her knowledge in that impressed me. She was honest in sharing that would be what was needed. We discussed other options such as the Cpn protocol but my ears could not tolerate the ototoxic Rx used with that.
I could not afford to continue seeing her but, two years later, I'm not much better trying to do the best I can with a few supplements on my own. I've about to start with a RIFE machine.
And, yet, the herb andrographis (as discussed in Buhner's book, "Healing Lyme" has saved my life. But it's still a very long way from a "real" life.
You need someone who will be assertive with your treatment. Even if abx are not on the menu or are some of the time, just trying to getting the body stronger will not work. VERY specific things are needed.
Be sure your doctor is also well-versed in other tick-borne infections. And in other chronic stealth infections. You should be also tested for Cpn, HHV-6, etc. If you have the right doctor, that will have already been covered. I hope so.
I know my cautions may set you back a bit but, hopefully, they will just serve to reinforce that you did, indeed, find an ILADS-educated LL ND and are on the right tract. If not, you have some choices.
If possible, you could find a LLMD in California or Washington state and also employ the ND for support treatment. I would get the very best LL doctor that you can afford - the one with the most experience and success.
Good luck. Take care.
=========================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
You all have given me so much to think about. I am definitely going to go to my next appointment armed with questions. Sounds like I need IV ABX, yes? I know they are very expensive, but how much a month can I expect? No insurance, but it sounds like insurance does not cover many people anyhow. I saw "Under Our Skin" a while back, are all IV abx administered through an IV in your chest?
And as far as testing goes, I had electrodermal testing, showed positive for Lyme, but my doc said not to worry about further testing because he did not have much faith that I would come up positive, since I have had this for so long. Without insurance, I try to get the most for my money, and spend wisely. Should I reconsider and shell out the $ for more tests?
Can anyone give me the names of LLMD or LLND in Oregon? I am going to turn over every stone, and find the right doc. Thank you all for helping me realize the importance of this. My current doctor might very well be the right one for me, but there is no harm in looking around a bit. Thank you for "setting me back" as you said Keebler, you have helped me realize how aggressive I need to be. I have a ton to read, and I will keep you all posted as I find out more.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are no LLMDs in Oregon. The Oregon Medical Board will not allow it.
There are a few LL NDs. And a few who think they are but are not. This group can help guide you to an ILADS-educated LL ND in Oregon &/or an ILADS-educated LLMD out of state. ---------------
OLDN: Oregon Lyme Disease Network -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may not need IV but you need a LL doctor who knows if, when, how - and how else.
You also need to be assessed for other tick-borne infections. If positive for HHV-6 (or any other chronic stealth infection), you and your doctor need to be able to sort out symptoms and coordinate treatment.
Be sure to go to the support group links in the OLDN site. Some meet just monthly, so you could have a meeting just around the corner. Portland's support group meets this coming Sunday, Oct. 9.
Be sure to read the articles and links over at the ND thread - Dr. Burrascano's guidelines are the main ones to read.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks again for the support and all the info. It will take me a while to get through it all, but I am going to look into the support group this weekend. It helps so much to know that I am not alone in this. I know this is my path, even though it is a rocky one. Just trying to keep my chin up, as it has been a dark, lonely road so far.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I use the term "ILADS-educated" a lot. That is not just knowing about both ILADS and Burrascano's guidelines (they are two different sets) . . . or about following such to the letter, as each person needs individualized treatment.
But every detail of those guidelines must be known - and the reason for doing things a certain way must be known. All the reasons. And, then how else the same end might be reached if alternate methods are employed.
Also, all the articles and presentations at ILADS' website should be familiar. An "ILADS-educated" LL doctor has been to some ILADS seminars or watched some DVDs of past meetings.
They will have communicated with other LL doctors. If a ND, they will be familiar with every single author at that ND Thread. They would know the similarities and differences between them.
They should know that there are over 300 strains of lyme and that, while often compared to syphilis, that syphilis is actually far easier to treat. They should know that Syphilis has 23 genes where Lyme has over 250. This matters. They need to have an intimate knowledge of Borrelia's spirochete. Not just the life-cycle but what makes it tick, and what makes it disappear and stay away. To get there, they need to know as much as there is to know about the cyst form.
If they don't address the cyst form, they are not treating lyme. Lyme has many forms, dozens, really. (See Sapi link below).
And, they must also be completely up-to-date on the science of all the other tick-borne and chronic stealth infections, including XMRV, now being called HGRV (see Timaca's thread, above).
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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