Can someone offer advice?

Hello everyone! First time poster here at healing well. I came here in hopes that maybe someone could offer me some credible advice in regards to my horrible situation with Lyme Disease.

I was diagnosed with Lyme in 2013 at the age of 18 years old. Symptoms came on as flu-like. I felt naseous and sickly, not being able to eat hardly anything for quite some time. Then the onset of the fatigue began as well as total lack of energy and a myriad of other symptoms including air hunger, and insomnia. I then decided ok, its time to see a doctor.

After the doctor visit about a week later I get the letter in the mail saying the blood sample they took came back positive for Lyme disease. At this point it kind of hit me hard to know that all of a sudden I just contracted this disease at this age. But I had no idea at the time of the horrors there were to come with it. So I followed up with the doctor and she gave me a course of antibiotics (Doxycycline) which I took for about a month. My symptoms persisted and even got worse. After my next appointment there they seemed to think that my Lyme should have been gone and didnt even seem to suspect that all these symptoms I was experiencing were actually still coming from it.

I then began to lose faith in doctors, feeling as if there wasn't much hope. So around Winter of 2013 I started researching online into various methods of getting rid of the disease, and eventually decided to try and go about this my own with self-treatment. I ended up buying myself antibiotics online- Metronidazole and Amoxicillin ( not sure of exact dosage off the top of my head ). I kept taking the recommended dosages of these antibiotics along with Samento and a few other holistic medicines for about 2 months. For a while I thought I was getting better because of all the herxing I was going through. Nope. After stopping the antibiotics I continued to feel horrible, with symptoms getting even worse.

For the next 8 months or so I roughed it out not seeing any doctor until I decided to go try out my local free clinic around Winter of 2014 ( since I turned 19 my medicaid run out and I wasnt able to afford to see a doctor ). I told them all that was wrong with me, and first thing they do ( AS ALWAYS it seems ) is give me an EKG. Which always comes back normal. Then they sent me to get an MRI done, saying that came back ok too. But they werent actually TREATING me. They wanted me to follow up with a neurologist at the clinic, which I should of done, but I was so discouraged from the lack of evidence I didnt go back. How bad I wanted some kind of concrete evidence the doctors could go by and go ahead and start treatment..

Since then I have not been to a doctor. Mainly due to the fact I have no income whatsoever, and my mother is disabled with rocky mountain spotted fever. I have the feeling if I were to go see a doctor at the free clinic, it would just be a waste of time as they wouldnt be able to properly treat me and give me the medication I need. I applied for disability earlier this year (recently got turned down for lack of evidence) and they recently told me I can apply for medicaid if I go to social security office but it wont be gauranteed that ill be approved. In my current condition I really can not work. I feel so bad everyday its hard for me to just get up and make myself something to eat. Probably why I only weigh 115lbs now compared to my healthy 145lbs I use to weigh.

AS of now here is what im currently dealing with as far as symptoms go:
- "Heavy" feeling chest pain.
- Everytime after eating my body reacts in a weird way and I feel like all my symptoms get immediately worse.
- Total lack of energy. As I said at times its hard for me to just get up and make myself a meal.
- Extreme Fatigue.
- Neurological issues. Sometimes lose train of thought in mid-sentence, balance issues, nerve problems in face (could be partial bells palsy).
- Horrendous Anxiety. I get extremely nervous now when anything social gets brought up, I had anxiety before Lyme but no where near this bad. It has made it much worse.
- Weakness and pain in knees.
- Hard time getting a good sleep in. And this really effects me big time when I dont get enough sleep, my symptoms feel about twice as bad.

and probably more I forgot to list.

Having all these problems makes it really hard for me living day-to-day and im absolutely sick of it. I feel like my life is totally miserable and its only going downhill. At 22 years old, I never expected my life to turn out like this. Especially when I had intentions of going to college and having my own family etc. But this disease has absolutely destroyed my life. After all this time suffering with it, ill admit I have tried some pain medicine off the street ( a buddy of mine had ) and when I did- it helped me to the point where I could actually get up, walk around, and do things I enjoy. So I feel like that would greatly improve my quality of life, but then again I don't have "evidence" of my pain because of the way Lyme disease works. And with my age in consideration I feel like they would think of me as some type of drug addict.

Is there any advice someone could offer me as to what steps I should take to head down the right road? Again my family basically has no money so I know my options are limited. Thanks for your time. Sorry for the rant.

Mike,

I've been through everything you have gone through, however not for as long as it seems you have. Regardless when lyme was at its worse for me, I totally understand what you are experiencing.

My advice:

Are you detoxing? Most symptoms and herxing is inflammation due to your body fighting and/or detoxing the lyme bacteria. I would argue more than half the battle is detoxing well. Detoxing has the ability to let you feel better to the point you can at least semi-function again and continue on with life. This is important because lyme recovery takes several months to several years. So mission number one is not "lets eradicate lyme", mission number one should be "let me detox well, so I can feel well enough to function". That's the first step.

How is your gut health? This is extremely important because most of your immune system is in the gut. And if your gut is unhealthy and your immune system is using its resources fighting off bad microbes and fungus that is running a muck in your stomach, then it doesn't have much resources to help fight the lyme. I was not able to make large strides in healing until I healed my gut first. Since you have been on multiple rounds of long term antibiotics I can confidently say your gut health is not in a optimal state.

You mentioned feeling worse after you eat. What is your diet? Lyme disease causes many food intolerance such as gluten, sugar, and starchy carbs. It can even create food allergies. Another reason why you may feel worse after eating is because of autoimmunity. Your immune system goes into hyperdrive and actually starts attacking the food as if they are negative threats to the body. For me, I went on a strict paleo diet for multiple months (a key part of gut health as well).

I would advise reading some of Stephen Buhner's books to really understand different herbal protocols and to go on one of his recommended full protocols. His protocols were made to work holistically together to be the most effective against lyme. Just taking some "random" herbs here and there and not right combination of herbs, holistically, may not have the same benefits.

Lastly, because you have lyme you have vitamin deficiencies. Some of them are most likely zinc, B12, and D3. They are some of the most common depleted nutrients when having lyme disease.

In conclusion: what is often over looked is the supportive aspect of treating lyme. A lot of focus is on "killing" the lyme (and this is important too) but as important and I would argue more important is the supportive aspect of healing from lyme. Gut health, diet, probiotics, vitamins, herbs that boost immune health, herbs that reduce inflammation (herxes), etc.

I just wrote a very well thought out answer to most of your situation and I ended up being logged out and lost it all.


The last thing I said was to ask what your Mom is taking for her RMSF?

There is a very good chance what she is taking would be ok and useful to share with you, therefore bypassing the no income/no insurance problem.

Mike,

Welcome. I am so sorry you have been going through so much. You are still young and you can heal and have a very full life. Please hold on to that vision of your future. Lyme is awful but you are stronger than it. Have faith. This board has saved my sanity and the moderators are lyme angels who will help you navigate every part of this. July and Descarte have offered tremendous advice. I will say that if you are feeling sick and overwhelmed the Buhner books may be like a foreign language right now. They were for me in the beginning. Lyme is a steep learning curve.

If you have a positive diagnosis for lyme you should be able to get medication from the ER or clinic in your town. Do you prefer to do an herbal protocol? Ask questions, come on here. We're here and we will listen and help you.

Prayers and hugs to you and your mom. By the way I have lyme and my 14 year old was just diagnosed. It's not easy being a young guy with lyme and having life sidelined. He will heal and so will you.

Girlie said...
The only problem with 'sharing' - is his mom would run out of her abx.

....or is it easier to get refills in the U.S.?

He's been on abx, I was thinking/hoping that she might be on an herbal protocol.

No, if his mom is getting abx from a regular md, her treatment is going to be just as short lived as his was, with no help getting more other than the method he used getting the pair he ordered himself.


Mike, that was something I mentioned in the lost post, the antibiotics (abx) that you took were good, just not near long enough. Treatment needs to continue at least 2 months after your last symptoms disappear.


If it's impractical to be on abx that long, or they are not working so well, many people switch over to natural methods, the most common being herbal. The Buhner book that was mention gives herbal protocols.

Which leads me to another thing that got lost....we have a section in our intro about getting financial help for treatment.

mike94 said...
Thank you everyone for the kind, warm welcome!

Dacarte-
At one point I was heavily into the detox thing and watching what I was eating, and I may of felt slightly better, but for some reason I just dropped all the upkeep I was doing. I still have my brush for dry-brushing maybe I can start off simple with that as far as detoxing goes. about my gut, I have a feeling its in pretty bad shape. During a period of time I was on a Candida program (since I read that lyme can cause it, and we also found mold in the crawl space of our house). I took various vitamins and supplements, as well as a probiotic called Primal Defence Ultra by Garden of Life. The diet was super hard though and without any sugar whatsoever I started getting headaches and couldn't hardly think straight. SO I dropped that program as well. As of now I'm back to eating whatever I can. Another thing about eating healthy though, is all the prep work involved and its really hard for me to just make something simple most of the time. But if it MUST be done, im willing to do whatever it takes at this point.

Yes, the diet is a pain in the a**. It should be against the law. To keep your sanity, just remind yourself it's not forever. I did it for two months. It's the most inconvenient, unsatisfying thing ever. I also experienced feeling weird and light headed as my body adjusted. It's temporary.

While on this diet I took probiotics that was in food form. This is very important. I got probiotic drinks that had real live "good bacteria" microbes in them (you can hear them living in the drink lol), I also got fermented powder vegetables and mixed in beverages.

The key is the probiotic has to be alive. You are literally taking microscopic bacteria and swallowing them so they can live in your stomach. When they are in food form, you body accepts it because it's real organic matter (it's food) and your digestive system accepts them as friendly.

What you don't want to do is take synthetically made in a laboratory "dead" probiotic.

If you do the diet and probiotics together, then you don't have to do it for ever. Most medical journals seem to agree that on average, 3 months is sufficient (however in these journals the patients were also taking antifungal medication and so was I). For me it took about two months.

Here to add healing and positive energy. You've received some awesome prompts. Welcome to team healing lyme and co-infections you are thing of the past.

julymorning said...
Mike, is your Mom not taking anything at this time to treat the RMSF? Is she healed? Or did her Dr. decide to quit treating her?


What do you think you would like to do?

Have a good night's sleep. We're glad you're hear too. It really angers us the situation we find ourselves in, but that's why we want to help, and we all help each other.

Lots of experience and knowledge between all of our members. It's awesome!

Sadly, she isn't healed. The doctor decided to stop treating her I am pretty sure.

Honestly, I'm still not quite sure on what path I should take. I have not had the chance yet to check out Topic you recommended, although that is where I got all my detoxing methods (including baths) a few years ago when I was lurking the forums.

I'm not sure if it'd be better to go about this my own again, or if it would be better to try and go through the process of applying for medicaid and seeing a doctor first. I feel like seeing a doctor first would be the best option the more that I think about it, so that I can get the proper medication to help me with my pain and insomnia ive been having. Having to go through treatment while already feeling this way would be torture.

I see you brought up the possibility of financial aid in treatment, I will have to look into that as well.

Also thanks for the welcome multifaced!

Traveler said...
Hi Mike!
Welcome to our community! I'm so glad you found us.

As far as diets, I haven't really followed one, other than eating as healthy as I can afford to, and avoiding heavy carbs, a lot of dairy, and sugar, plus any foods I'm allergic to. I'm not at all concerned about loosing too much weight, as I've had the opposite issue due to thyroid and adrenal issues.

I would encourage you to be sure to include healthy, high caloric foods in your diet, like nut butters, avocados, and so on.

And I'd like to mention that the headaches that you were getting from having no sugar, are most likely because you had a yeast infection. Of course, I don't know if you still have one, but if you can't go without sugar or carbs still, the likelihood is very strong.

We usually tell people to start detoxing right away, because the Lyme bacteria puts off toxins as it dies, either from treatments, or just as a normal part of it's function. These toxins will accumulate in many of us and create a lot of symptoms of their own: www.benbrew.com/lb/lyme5.pdf

Here is a great listing of detoxing ideas that can help you to choose what to start with: www.tiredoflyme.com/detox-methods.html

A good probiotic is necessary, I use kefir that I make at home, so it's only the cost of the milk to culture. Homemade kefir actually supplies a lot of different strains of good bacteria, and is fairly inexpensive:
www.culturesforhealth.com/learn/milk-kefir/milk-kefir-grains-composition-bacteria-yeast/

I don't know much about the pharma abx options, but I would encourage you to go ahead and start with the Samento, but be sure to start off with only one drop per day. After 3 or 4 days of that, if you aren't herxing much, you can increase to two drops per day - 1 am and 1 pm. If, after 3 or 4 days after that, you aren't herxing much at all, you can add in a third drop a day, around midday. This is the best way to work up to a full dose and keep the herxing to a minimum. If at any time, your herxing gets to be moderate, we suggest that you hold on the dose you are taking at that time, and increase your detoxing before the herxing gets serious.

Herxing is actually a cytokine storm, and they can quickly get out of hand and require emergency medical care in order for the person to survive, as it leads to anaphylactic shock. So we don't encourage members to push their body at all when herxing, but to ease up on treatments and to increase their detoxing.

Keep asking questions!!!

Thats one thing I could probably use more of, healthy high calorie containing foods. I'll have to create a small grocery list.

You may be right about the fact that I could of had a candida infection when I was getting the headaches, that had crossed my mind also. If I go about this in the correct manner I could possibly treat both my Lyme as well as the Candida (if its there since they seem to have similar treatment other than abx).

Super glad you brought up the idea of making a probiotic at home. Before catching Lyme I was an avid gardener, and one of the best ways I learned to give the microbes in the soil a boost was to create a culture from rice wash or either milk. I will have to look into this again as my memory is a bit hazy.

I will start the Samento today, as you recommended with 1 drop or possibly two. When I was taking it before (when I was on the Amox and Metro) I think I got up to about 18 or 20 drops without much of a reaction. Since I've been so long without any treatment though 1 or 2 drops is probably best,

Thanks for your help :)