posted
I'm officially welcoming myself to the Lyme Disease club. I was officially diagnosed today! I received my blood results 2 wks ago, figured out the issue then through researching on my own, but the DR confirmed it today. Already knew I was in a FMS/CFS flareup.
Lucily my Dr is Lyme Literate! Even luckier, I found your forum, found lots of helpful info, been researching and walked into DRs office prepared.
Dr is not taking new Lyme patients. He is keeping me though - I came in prepared and knew something about treatments and issues. He didn't have to "spend an hr telling me all this info".
another set of blood tests drawn today looking for COs. He wants to know EVERYTHING that I may be harboring.
Question: what to expect next? Will start the following tonight:
Suggestions on how to handle these meds, best times to take, etc.? Looking for lessons learned to make it through these treatments easier.
I'll be meeting with DR every month - what should I expect at these appts?
Again, thank you all for this forum - I'm looking forward to learning alot from those that have been dealing with this for while.
Posts: 250 | From East Coast | Registered: Jan 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What lab is he using to test for coinfections? If it is Quest or LabCorp, they are practically useless.
Burrascano always recommended Igenex when he spoke. They are a reference lab, and that's what he recommends doctors use in his Guidelines. Quest and LabCorp are not reference labs.
I gave you tips on taking Doxy in a previous post.
Dosages are just as important as the meds prescribed. Check with Burrascano Guidelines to see if your doses are adequate.
Did he tell you the need for supplements? See the section on Supplements in Burrascano. Also, did he tell you about the anti-yeast diet? That is near the end of the Burrascano Guidelines also.
My lyme doc told me that I would NEVER get rid of lyme if I did not do the Burrascano exercise program (one continuous hour of weight lifting every other day). Burrascano says the same.
So, I suggest you start doing it. Work up to the hour if necessary. Do light weights, many reps. See the section in Burrascano called Lyme Rehabilitation.
So, what I suggest is that you STUDY the Burrascano Guidelines. Practically memorize them. Do his 4-pronged approach:
antibiotics supplements and herbs anti-yeast diet non-aerobic exercise
All 4 prongs are necessary to get rid of this horrendous disease.
The more you study Burrascano, the better able you will be to evaluate your doctor's treatment of you.
You also need to know about detoxifying your body. This will lessen the herx reactions you will get. My lyme doctor told me to eat 4 lemons per day and drink plenty of water. What did your doc tell you to do to detoxify and lessen herxes?
I squeezed the lemons into water and threw as much of the fruit in there as I could. That was my only drink as long as I was treating this disease. I definitely had mild herxes compared to many other people.
These are my lessons learned. I got rid of this horrendous disease. Many do not. I only got rid of it when I switched to a doc who followed the Burrascano Guidelines.
Before him, I had 2 other lyme doctors. I finally concluded that they did not know enough to get me well. They did not follow Burrascano. They didn't tell me I needed to take supplements, do the anti-yeast diet, or do non-aerobic exercise.
I only got a certain amount of improvement with them. Then, I started going backwards--getting new horrendous lyme symptoms.
Burrascano was the most successful lyme doctor on the planet when he was practicing. They came from all over the world to see him.
So, my lesson learned is to get the very best lyme doctor you can possibly afford. That gives you the best chance of getting rid of this disease.
Many doctors treat lyme disease, but only a handful know enough to get rid of it for a person. Once you have had lyme for as many years as you have had it, your immune system is compromised (like AIDS). So, you have to have a doc who knows how to help build up your immune system and all of the other complexities that chronic lyme brings to the table. The non-aerobic exercise boosts the immune system--a necessity if you are ever going to be able to get off of lyme medications.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I've already studied alot of the theories. I walked into the office with the Burrascano literature from this site. He laughed - it's dated 2008, he said there are newer docs that Burrascano has.
Dr handed me a questionaire to fill out, I handed it back to him and then gave him the one I got from this site - he laughed, the questionaires were exactly the same. I did my homework before I knew for sure what this was!!! The dr was impressed!
Anyway, my dr is a follower of Burrascano and a member of his team. He attends his seminars, etc.
Yes, I will be doing detoxing and supplements and herbals etc. Dr does not want me to start them until we get todays blood work back so we know what co-infections we're dealing with.
I'm not sure which lab he is using. I trust him and he is following Burrascano with additional herbals.
I have Celiacs so I've been on a glutenfree diet for about 3 yrs now. I also take probiotics.
I'll write down your lemon and water trick and keep it handy when needed. I'm not forward to all these antibiotics with gut issues already before I start them.
Bought a daily pill sorter so I can keep all these meds straight - take with meal, take before eating, etc. The dosages match Burrascano as that's the method we're using.
Been dealing with Fibromalysia and Cronic Fatigue since about 1978 - same dr helped me put them on hold about 8 yrs ago. Thought this was the FMS/CFS back to haunt me - add Lyme to the mix and I'm a mess.
Posts: 250 | From East Coast | Registered: Jan 2013
| IP: Logged |
posted
Now I see why you said at the beginning that your Dr is not taking new pts. He sounds like a real keeper and a jewel and we are drooling. But we are also very glad for you too.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
posted
jjourneys, one thing I've learned is that every body is different in infection and treatment. Lucky this board has members galore, so if you need an expert hand, someone is bound to have had a similar experience. Don't be too hard on yourself if you do not get good results with a particular treatment, there is something else out there that someone has researched or tried. I don't do particularly well on herbals, but am taking A-Bart herbal for bartonella at the moment and I think it has an effect. You body is unique, and one of the things that drives some people crazy is the unpredictability of this disease. What works for one, doesn't work for another, and this bug fights dirty and will attack something on you and not on another. There isn't truly a "how-to" treat like other diseases. So, pick and choose what works for you best and post here often if something isn't working for you. As you can tell, we all have an opinion....
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
posted
Kentucky Woman - thank you! my Dr is a keeper - been using him for years, luckily!! We work well together and always on the same track!
OtterJ - thank you for answering. I check this board at least daily - I don't always sign in though unless I have something to say. You are all so informative and helpful.
Posts: 250 | From East Coast | Registered: Jan 2013
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Hi and welcome to the group, though I'm sorry you've joined the ranks of us with Lyme/coinfections...
Anyway, here are some tips I've found helpful to keep in mind:
1. This is a marathon, not a sprint. Don't let it get you down if you don't see dramatic improvement immediately...it takes time to kill these bugs.
2. The main things to focus on are:
** Rebuilding the body's immune system and any other systems destroyed by Lyme (supplements, herbs, etc. can be used for this);
** Supporting important organ systems - liver (herbs, supplements, diet), kidneys (fluids, electrolytes, herbs), adrenals/thyroid (supplements, bio-identical hormones, etc.), gastrointestinal tract (probiotics, diet), etc.
** Getting emotional support (LymeNet is great, and it is good to also have support locally and/or from family who live close);
** Cleansing and Detoxing the junk these infections spew into our bodies daily, in addition to the dead bugs themselves (there are lots of ways to detox - dry skin brushing, lemon water, epsom salt bath soaks, etc.);
** Killing the bugs (Lyme/coinfections).
3. Tests aren't everything...we already know Lyme tests are woefully inadequate and inaccurate, and coinfection tests are even less accurate. It is more important to treat the patient's manifestation of Lyme Complex (i.e., Lyme + Coinfections) rather than relying solely on the test results...
4. There are great resources here on LymeNet for just about any question you could possibly have - it is wise to ask questions and make full use of this valuable resource through your journey to wellness.
5. Remember there are other things that can cause symptoms in addition to Lyme/Coinfections, such as colds/flu, appendicitis, etc.
So if something new crops up, while it may well be due to Lyme/coinfections, it also may be something new that needs to be dealt with. So don't shrug everything off to Lyme...
6. Most important is to maintain a good sense of humor about all of this stuff. I think it is a really helpful stress-release to find something to laugh about frequently (my Husband helps enormously with this for me - he is always coming up with something silly or hilariously funny).
There are lots of things online that have cute, funny or cheerful content (U-tube videos, cartoons, stories, etc.) that can help with this.
I hope this helps...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Razzle - thank you! I'm glad I'm a member here - you all are great!!!!
Humor keeps me going. I too have a great husband for that, and I'm a Facebook joke pusher!!!
Luckily - or unlucky - depending on how you want to look at it, I've had Fibromylagia since 1997 - dealt with it, got it to go away about 8 yrs ago. I thought this was the FMS again, but new symptoms came along - that's when dr tested for lyme - positive. therefore I understand and know what your saying in your post. and the the #1 reason I came to this forum!!!
You mentioned 2 things I'm not familiar with though: dry skin brushing and epson salt baths - gotta research these 2 items!
thank you for your help!!!
Posts: 250 | From East Coast | Registered: Jan 2013
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic