imalyme,
Here are two links to Lyme Association in your state, you could try calling to see if there are any support groups within driving distance from where you live.
http://www.lymenet.org/SupportGroups/UnitedStates/Iowa/Roland.shtml
http://lyme-aware.org/blogs/my-blog/437-iowa-lyme-support-groups.html
Ally
Hi imalyme … I so can relate to your physical situation. I too must drive three hours one way to see an LLMD and yes… It is exhausting. You need to know I feel you are on the right track getting tested by Igenex and going to a LLMD. Think of the 3 hour ride as a small getaway. I and whom ever comes with me, relax in the car… Listen to some good music… Snack if course lol and just try to take it easy. We pretend it’s a little getaway for us. I was dx two years ago after having some of the symptoms for two years prior and it’s been a ride to beat all rides. I empathize with you about the mental and physical pain it brings and the frustration you have to go through just to get treated. Rent the movie " the Dallas buyers club" and substitute the word HIV for Lymes every time they use the HIV word. It’s so similar to how Lymes us bring treated and looked at now. Here’s the good news… Finally… With the right LLMD and medications I feel thus disease can be cured or at least bring you back to a functioning level that will please you tremendously. I’m not there yet … But the people I’ve seen that take the treatments with me have improved dramatically. Having hope is the best thing you can hold on to. This site is a plethora of information and you meet people that truly care. I wish you the best if luck and keep the faith!!!
imalyme,
I too am so sorry to hear of your husband passing. I hope each day gets a little brighter as time goes on. Regarding twitching, I have terrible twitching in my neck, hands and body spasms. you mentioned taking Doxy? Did the twitching get worse when you started treatment? If so I recommend looking into Herxheimer Reactions. These refer to the body's rreaction to abx treatment, and is also called the 'die-off' affect.
If not in treatment, twitching is not uncommon for Lymies. I have had tics for over four years now, that are not abated by any medication I have taken.
All the best to you, this group is really great for support, and we are glad you found it!!
Hi everyone, Well, after the Dr increased my Doxy to 400 mg a day I think I'm Herxing, but not sure. Headache and nausea for the past 7 days, brain fog has increased also. I started cutting down on Doxy when this started and now have stopped. Anyone have any suggestions how to detox and get through this quicker? This is all such new territory for me. I have increased my magnesium and today upping my Vit C, Trying to drink lots of water and keep my pH in balance. I do take Milk Thistle ( among a ton of other supplements ) and am thinking about increasing that also. Any suggestions would be greatly appreciated.
I hope everyones doing as well as can be with.
Thanks
Hi imalyme,
Doxy is one of the gold standards...but I could not tolerate it. Doxy caused me to be sick the same way as you. My Lyme doc put me on a protocol of between 2 and four different oral abx...still makes one feel like crap, but overall was better than Doxy.
I tackle stomach pain with a tsp baking soda in 4 oz water...or find a plop-plop fizz-fizz product like alka seltzer gold with bicarbonate...it neutralizes acid. Ask your doc about this tho- don't want to lead you astray.
Are you taking a really good probiotic? Doing so made a difference with IBS, stomach upset etc. can't take them at exact time as abx...need to space out like 6 hours.
There is a test called HLA DQ Testing. It tests to see if your body detoxes properly.
Prayers sent your way
HI THERE.... am also a new "LYME"... DO YOU HAVE ANY INFO ON DIET AND HOW IT HELPS US??? HEARD SPIROKETES LOVE SUGAR...??? HOPE TO HEAR FROM YOU AND PRAYING FOR RECOVERY FOR YOU...)
RICHARD
Hi Richard,
Great question about diet and sugar. My Lyme doc put me on a high protein low allergen low starch diet. So I avoid wheat, corn, soy, peanuts, some dairy, bananas (starchy), citrus (too acidic), and obvious sugar. From what I understand sugar does feed spirochetes and comes in many forms...glucose, lactose and sucrose for example.
I have lost over 40 pounds, and continue to drop. My diet consists of plenty of lean protein, green leafy vegetables, fermented food (miso, sauerkraut, kombucha), quinoa, rice...and truthfully I love potatoes, coffee and the occasional sandwich or taco. I do not stop myself from something I "crave" but try to limit the indulgences to a few times a week. Hope some of this helped...wishing you well.