NEW-IS IT REALLY LYMES? Just started A-L Complex

Hi Everyone-

I was doing some research on A-L Complex and came across this site. I am hoping to gain some information and insight.

Up until a little over 2 years ago I was relatively healthy. I have had multiple back surgeries due to a car accident and have always struggled with my weight but no other concerns other than the chronic back pain from the surgeries.

about 2 years ago I became sick with what I thought was a severe cold/flu. I was severely sick for several days but have never got better. I had daily low grade fevers, headache, pain at the base of my skull, chronic sinusitis, swollen lymph nodes, chills, brain fog, memory loss, muscle pain, extreme fatigue, vision problems, sensitive to touch, noise and light. Also I started getting really low blood sugar ( I am not diabetic) and weight gain.

My Doctor believed that I had lymphoma and I went through all those tests after that came back negative I was put through many tests for bone cancer, MS and other diseases. I was sent to an infection disease specialist because of my "fever of unknown origin. I was tested for almost everything for over 6 months. I had MRI's ,blood test and nuclear bone scans. They found a cyst on my pineal gland and some "shoddy" lymph nodes in my abdomen but "nothing diagnostic. My test for Lymes came back positive. I couldn't understand how I would get lymes as I am not an outdoorsy person. A few months before I got sick I did spend several weekends taking my kids to a heavily wooded area to swim. They sent me to a rheumatologist who said he was excited to diagnosis his first case of lymes disease. He ran more tests and then said that the original test was a false positive and that I did not have lymes. He then said I had fibromyalgia and after that I couldn't get much of a response from any of the doctors in the Kaiser network. Suddenly they treated me like I was making up my symptoms and offered me an antidepressant that I refused.

about a year after I first got sick, I was still having fevers but not daily. The acute symptoms were not as bad but I had severe fatigue and pain throughout my body. Prior to getting sick I had been successful in losing a large amount of weight with diet and exercise. I began gaining weight and could not lose no matter what I tried. I developed severe anxiety during this time. I went to my doctor and told him that I was so tired I couldn't make it through the day, pain was severe and no matter what I do I can't lose weight. I explained to him that I know how to lose weight since I had lost 100 lbs in the past but that nothing was working. He told me "sounds like you need Ritalin, sounds like you have an attention problem" after that I left in shock, I felt let down by my doctors, I felt helpless.

Since then my symptoms also include strange itchy rashes that come and go quickly, food allergies, frequent urination and insulin levels that are 3 times the normal amount, causing very low blood sugars and extreme hunger. I have sought help outside of Kaiser and am paying out of pocket to see a naturalpath. Since my first visit 6 months ago he believed that I had lymes disease. He said it was most likely a false negative not a false positive. He believed my immune system is attacking my body including my pancreas which is causing the abnormal insulin levels. Yesterday I finally agreed to start taking A-L complex. I started it last night. He said to start with 5 drops and go up 2 drops each day. After reading some of the posts on here I became scared and started with 3 drops last night and 2 this morning. I felt strange immediately after taking it. I am not sure if I have lymes disease but at this point I don't feel I have much to lose. My quality of life is terrible. I am able to work but that's really all I can do, I have nothing left at the end of the day for my family or for myself.

I am wondering if anyone has had similar experiences or symptoms. Any information and/or advice is appreciated.

Is the ND you are seeing Lyme Literate?

Is that the only thing he has you taking? Any support supplements?

It's really important to try and find a LL Dr to treat you - if possible.
Lyme disease doesn't usually come alone - there are co-infections such as bartonella, babesis to name a couple and some people have other issues such as Candida, adrenal and/or thyroid issues...etc.especially if you've been ill for quite a while.

I hope you keep coming here to read, post, and ask questions - there's a lot of knowledge and support here.

Hi Wldrainstorm!!
Welcome to our community!!

I'm so sorry for all the run around that you have been through! Do you have access to that Lyme test that you had done in the beginning? We could help you figure it out if you wish.

You don't have to have a tick attach to get these infections, many more insects carry them like mosquitoes, fleas, biting flies of all types (sand, deer, horse, etc.), spiders and more.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

It sounds like you may have a Lyme literate ND. Have you asked what training they have had? It would be best if they had ILADS ​(International Lyme and Associated Diseases Society)​ training, although not always necessary. I healed my infections with a Traditional Chinese Medicine practitioner that didn't have ILADS training, but you do have to be watching to be sure that you are kept on track when not using a doctor with ILADS training.

It's been fairly well documented that Lyme can certainly create insulin resistance in a person - there are no organs off limits to Lyme disease or the other co-infections.

How are you feeling now after taking the A-L? Are you detoxing?

Your symptoms that you are experiencing now certainly sound like they could be from Lyme, I bet you will know pretty soon though, as the Byron White products seem to work for most people.

Please do keep posting and asking questions!!
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Component Results-FIRST TEST
Component Standard Range Your Value Flag
B. Burgdorferi Ab <=0.90 1.83 H
LYME (BURGDORFERI/) AB COMMENT Has been added

Yeah, this is a positive ELISA test. Again, not a false positive, no such thing.

In regards to the question about support supplements-In regards to lyme and A-L complex I am not taking anything else. I just started the A-L complex last night. It is hard to explain how I feel. I feel almost drugged, a strange sensation through my body since I took the first dose last night and another this morning. I feel slightly nauseaous and just an overall "sick feeling", but nothing to bad.

I am taking Berberine and bergamot for insulin support. Vitamin D, B-12, and the mighty 90 vitamin and mineral complex. At times I take 5htp and lysine.

I do not believe that my ND is fully aware of appropriate treatment although I feel he is more educated than the others I have seen. I do not believe he is certified in Lyme treatment. I looked up a specialist in my area, the costs of seeing this person is very high. I am not sure what to do since I have Kaiser insurance and they have said that I don't have it.

Does anyone have any experience with this? Would it be helpful to get a diagnosis from a specialist and then submit this to Kaiser?