Pretty scared about my future, maybe some of you can relate

I share your fear Reba. I haven't been dealing with it as long, but I am just as afraid. I'm going into my second month of abx and feel terrible. there were a few days in the middle of my first month where I felt okay. The closest to feeling normal that I've had since I started being sick. But the past week has been awful. Brain fog is back, headache, air hunger, fatigue, malaise, all on top of the gastric issues and abdominal pain I've been constantly dealing with. My throat has started feeling funny and sometimes I feel pain and can't tell where it's coming from. I'm hoping is just a bad herx.

I got my associates last semester and wanted to get another job so I could get my bachelor's. I had so much planned and suddenly my life is at a complete standstill. I have never been sick like this before, and I know patience is important with lyme and it gets worse before it will get better. But right now, I'm scared I won't. Or that I have something else on top of Lyme that the doctors missed or haven't thought to look for.

I know Ii'm being overly sensitive to every little thing I'm feeling. I have gastric issues and an endoscopy scheduled for the end of the month, The GI doctor scared the hell out of me, telling me she was checking for cancer. She's concerned about my weight loss, I've lost about 30 lbs since June, and said that it's rare to have cancer at my age (29) but not impossible. I went home and immediately started crying, in front of my mother no less.

Like a lot of people, I've been told that I look fine or I'm looking better. But I feel terrible and I am so over feeling terrible. I plan on seeing another LLMD in October that will hopefully test some stuff, like adrenals.

I'm the only one in my family dealing with this, so most of the time I feel alone or frustrated because they don't understand. Especially when you're trying to eat healthier and better so as not to aggravate or inflame anything and the family comes home with ribs and cheesesteaks and nothing you can eat. I understand they are still living their lives but sometimes I feel invisible. Like a nuisance that is just taking up space in a room in the house. I barely leave the house unless it's for a doctor's or acupuncture appointment. Somewhere along the way I've developed severe anxiety about driving around. I have a panic attack with anything further than a few minutes away. Which is the complete opposite from the person who loved to just drive around and check stuff out. I was one of those people who enjoyed getting lost sometimes.

Now I barely recognize myself. I'm scared I'm never going to see the old me again. And you are right, venting helps. I hope you turn the corner soon and start feeling better.

Post Edited (Cheetahjade) : 9/19/2014 11:50:14 AM (GMT-6)

Lymebabe said...
Reba just the fact that you have another family member dealing with this leads me to believe that you might have either HLA or MTHFR genetic mutations *(or both). Have you been tested for these? If not I highly recommend it! HLA prevents you from being able to detox mold. If you don't take care of these first you will never heal. Also, I would get tested for organic solvents. When I was at Sponaugle there were a number of people who had very high levels of benzene or toluene and they had no idea how they got exposed. Pesticides don't help either. Basically any toxins that bind to fats. Hope this helps.

I haven't been tested. I'll get that done. I feel decent right now on abx, but that's different than feeling good off abx.

Even if I had those, what would I do in response?

There are treatments for those that have those gene mutations.
You can get those tests run by any place that will draw your blood and send it off to the right lab, one like 23andme.com
There is another lab doing these tests as well, but I can't remember their name.

If you are not healing, then something is blocking that healing. Get your adrenals & thyroid checked (& do the reading to be sure that the right tests are being used), get tested for mold exposure, gene mutations that are preventing you from detoxing and make sure that you are giving your body the best chance to heal by supporting any system that is not performing at it's best.

And don't forget that there are co-infections with bacterial and viral components that have to be taken care of first many times.

The "ride" gets bumpy from time to time, but that doesn't mean that you won't make it!

Keep reading and learning. The most common things people deal with when trying to heal from these infections have been mentioned in this thread. I'm pretty tight with my money, yet I have been able learn all I needed to for my own healing just by researching on the internet (Dr. Google- as it's beginning to be known as) without buying DVD's or other products. There are some good books out there about Lyme and how to heal - but they are based on one protocol which may or may not work for you, so read, read, read! I've purchased one book and it wasn't to help me heal, but to help me understand the different approaches to healing ("Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies") - but if I were to buy another one it would be Dr. H's book: "Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease".

A good site to read more (& learn about testing and more) for thyroid and adrenals is www.stopthethyroidmadness.com/ I even found my new doctor through their Yahoo group - A MD that only uses natural therapies.

Amy Yasko has done a ton of work on the Methylation cycle and detoxing - you would do well to understand as much as you can:
www.dramyyasko.com/our-unique-approach/methylation-cycle/

Mold exposure is something else that can hamper or stop healing from tick-borne infections. Dr. Ritchie Shoemaker is the best one to turn to for this information: www.survivingmold.com/

And we have a really good search function on this site so that you can look up past posts and see what others are doing/finding out about each condition/situation. Just be sure to use the word Lyme in the front of any other search terms so that your results will mostly be from this forum.

Keep educating yourself and seeking answers - you will find them!!

Traveler said...
Keep reading and learning. The most common things people deal with when trying to heal from these infections have been mentioned in this thread. I'm pretty tight with my money, yet I have been able learn all I needed to for my own healing just by researching on the internet (Dr. Google- as it's beginning to be known as) without buying DVD's or other products. There are some good books out there about Lyme and how to heal - but they are based on one protocol which may or may not work for you, so read, read, read! I've purchased one book and it wasn't to help me heal, but to help me understand the different approaches to healing ("Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies") - but if I were to buy another one it would be Dr. H's book: "Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease".

A good site to read more (& learn about testing and more) for thyroid and adrenals is www.stopthethyroidmadness.com/ I even found my new doctor through their Yahoo group - A MD that only uses natural therapies.

Amy Yasko has done a ton of work on the Methylation cycle and detoxing - you would do well to understand as much as you can:
www.dramyyasko.com/our-unique-approach/methylation-cycle/

Mold exposure is something else that can hamper or stop healing from tick-borne infections. Dr. Ritchie Shoemaker is the best one to turn to for this information: www.survivingmold.com/

And we have a really good search function on this site so that you can look up past posts and see what others are doing/finding out about each condition/situation. Just be sure to use the word Lyme in the front of any other search terms so that your results will mostly be from this forum.

Keep educating yourself and seeking answers - you will find them!!

Good stuff thank you!

Traveler, besides MTRFR and HTR, would you suggest any other blood tests?

I have the Horowitz book, by the way.

Lymebabe said...
Both MTHFR and HLA can be ordered by an LLMD but I am not sure if they know how to read them. This is described in Shoemaker's books (I think it is in Desperation Medicine?). For MTHFR you need to take methylated B9 and methylated B12. Liposomal glutathione is great too. For HLA I take Cholestyramine and I cannot tell you the amazing difference it has made in my life!

Is there any harm in taking these things regardless of test results?

Reba with the vitamins and glutathione there is absolutely no danger of any damage. Cholestyramine binds anything that binds to fat so if you are going to be on it long term you need to think about supplementing fat soluble vitamins (A,D,E,K). However, it binds Lyme toxins and a bunch of other toxins too (like pesticides) so for me the benefit has greatly outweighed any potential side effects. Some people have it compounded because the regular one contains an artificial sweetener. The compounded one tastes gross though so that might be just too much to swallow (trying for a pun!) for those people who are having a hard time with digesting, swallowing, and eating anyways. Also, I had a reaction to Cholestyramine manufactured by PAR. God knows what they put in it for fillers. I do well with Sandoz. It is a prescription medication though. Overall, I would definitely recommend it. When I take it I can feel relief within 30 minutes.

HopeforNow that sounds great. Everybody should be taking liposomal glutathione in this day and age IMO because everything is so polluted. It is next to impossible to live a toxin free lifestyle. Some liposomal glutathiones are better than others. Some just don't work. I have not really done research on this issue but I know that there are some that are OK. I take Essential Pro.