Can Lyme Disease cause autoimmune disease

[Murphgolf]

Okay. I am not trying to say Lyme Disease is an autoimmune disease. But still trying to figure out why I am losing all the fat on my body and it continues.

At first, my doctors, including LLMD, thought it was ACA. Now both are considering Lyme Diosease caused an autoimmine reaction. First because a skin biopsy showed atrophy but no signs of ACA. Second, because I have not lost any hair in the areas, like legs, arms, etc, which ACA can cause.

In an effort to go after Lyme and possible co-infectioins, I have started IV clindamycin and oral Tindamax. Four days a week of Clindy and a month straight of Tindamax. So I am now totally confused as to what is happening. Could it not be Lyme Disease, even though bands 30, 31 show up on Western Blot? Is it logical for Lyme Disease to cause fat loss due to autoimmune? And I have not had a "bad" herxl, just tired, dizzy and a bit spacey. But that could be from meds.

Anyone have any ideas? Everyday things are getting worse, and it is wearing me out, as I know you can all relate. Trying to keep a good attitude about it but depression is starting to sink in with anxiety.   Apprecate any answers or thoughts.  

[Murphgolf]

Joust about drives you crazy at times, doesn't it? Been through that where no one believed me. Cost me a divorce and huge loss of time with my kids because, as I mentioned before, no one would believe me. BUT I KNEW. You know your body, and I was always working out and running races, so I was very in tune with my body. And if you know something is wrong and can see it, then something is wrong, thank God not a life taker. Bu ta confidence taker, which I can relate to. I ma now working on trying to do whatever I can to feel better and, maybe, improve the fat loss. As long as I can keep moving forward, which I have recently, then I feel better. You will get there, especially after all else been cleared and there is only one thing left it can be.

Not saying I know for sure it is Lyme Disease, but there is a good chance your tests will show something. And after eliminating everything else, by all the doctors who don't believe in Lyme Disease, you will know, if all else is eliminated.

Never lost any strength or had muscles atrophy - just fat. But it still concerns either way. Don't stop until YOU know what is going on, or hgave a good idea. Since bicillin has made me feel better, I have to believe mine is Lyme Disease. Just took two years to get something that helped. You will too.  

[danibwell]

Thank you Murphgolf.  In my case, some thought I was crazy, but the orthodontist admitted he could see it, but not explain it.  He thought it was from sudden weight loss.  Plus, because I had braces put on jut a few months before, I had before and after pictures!  Proof!  I have met a few others who have had the same experience with the braces, online.  After that, I don't if it was stress or elimination diet, but I got much smaller.  wrists, ankles, thighs, shoulders, etc.  Then, maybe also due to the diet, my muscles got weaker and had strange sensations and I think there has been some atrophy.  I am working on doing simple toning exercises and detoxing.  
I am wondering how many on this board have explored the leaky gut possibility?  The only three concrete connection that I can make in my case is the use of antibiotics and the metals. and the tick bites.
I also had vitamin d level of 22.  

[mojogal]

I am sorry that anyone treated you badly for having that. I have it in different places.

[Murphgolf]

That's interesting. As I have mentioned n posts, 10 years ago I was telling people I have lost the fat in my temples, and I might as well have been telling them I was from Mars. No one believed me. Looking back, I can see I was slowly losing fat over a number of years, but never felt real "bad." But I had migraines a lot and other signs that something was wrong, like dizziness at times.Was told it was migraine associated vertigo, but now I think differently.

Will be interested to see what your IGenex test results are. Have you done a lot of tests to rule out other possibilities? I don't mean Loss of life type stuff, but the basic infections that can cause symptoms like yours and mine. People seem to say the worst things, which only made things worse for me. Whatever you have going sounds so similar to what is happening here, so the IGenex tests will tell a story of some kind.

Have faith in finding answers and vigilant in your research. Doctors won't do much in that way for you, as I have found out.

I try gluten free and stayed completely with it for a long time. I have recently lapsed in that area, and will get back to it. Question- when you say your fingers get cold, is in only in the colder weather or anytime? Mine do the same thing from time to time. Mainly two or three of them, but it only happens when they get a little cold, and not often.

Hang in there and if you would like, stay in touch. We seem to share the same problem, and there's not many out there like that. The good news is I feel better, but not well, taking the bicillin. Point is, hope is always in front of you.

Murphgolf

    

[danibwell]

My fat loss was in the temples, too.  Also all about my face and head.  It did not equate to pounds lost on a scale. My Igenex results should be back after Thanksgiving.  Meanwhile, I am going gluten free because I have read a lot about gluten ataxia and wasting.
Another strange symptom is a finger that turns cold.  And I get the internal racing feeling lot.  Among many other things.
I'm glad you are finding a treatment that is working.

[cave76]

I'm glad (and not too surprised) that the bicillin is starting to be a good drug for you! (I'm still bemused by the fact that it's not one of the most rx'd antibiotics prescribed if a person is past the first few weeks of infection! But.....)

Keep on with the bicillin. I know many people who have to stay on it for years and years----because when then go off---- symptoms come back. Jabs in the rear are a small price to pay for remission, I think.

[Murphgolf]

As Jackie C. said, welcome to the site, though I'm sorry for the problems you are experiencing.

When did I first notice fat loss? It was at least 10 years ago when I noticed the fat in my temples had "gone in." No one believed me, and I was having other problems at the time too.

Looking back, I think it all started out as a very slow process, but it broke wide open when I was under severe stress from my business. Bad news is I have lost much of the fat in my body, as you mentioned you have. And the restrictive diet definitely added to that. Also went through depression I couldn't control, along with anxiety. And still no one believed me when I told them something was wrong until I was fortunate enough to go to a rheumotologist who had a good background with Lyme Disease and sent out tests to IGenex.

But no other doctor believed I had Lyme Disease,and other than my LLMD, no other doctor still believes it. Truth be told, it has been hard for me to believe, but I do now.

The GOOD NEWS is I am now taking shots of bicillin and another antibiotic and feel better than I have for months and months. My emotions are back in check, and physically I feel better. I have even gained about 4 pounds in the last week or so.

This doesn't mean I am cured. It may take months/years. Who knows? But the good news is there is help out there, and you are on the right path. There are also people on this site who have been life savers for me, and I know they will help you any way possible, as will I.

The fat loss is rare, which makes it all harder to understand. But hang in there and keep on being your own advocate. Learn all you can, and get to know which doctors have a real clue about Lyme Disease and those who don't. There are many more that don't than do, but they will make you believe you are crazy for considering Lyme Disease.

Instead of focusing on Lyme Disease, I had so many tests for other possibilities, I now know Lyme is the only tests that came out near positive.

Stay with it, believe in your intuition, and advocate for your health by learning true facts through Lyme Disease organizations. I wish you the best and if I can figure this out, I assure you it is also something you can do.    
      

[JackieCalifornia]

Welcome to MedHelp Lyme -- I don't recall seeing your name here before, but glad you have found us.  

About your children, try not to stress over it, tho I know it's hard.  Children are remarkably resilient when it comes to Lyme, and when you have located a good LLMD for yourself, doors will open that lead you to a doc to check your children, or perhaps your own LLMD can do so.  

My teen had Lyme and a co-infection, and did just fine with treatment -- tho I had to drag her to the LLMD after I was diagnosed, because she insisted she was not ill.  My doc thought I was a little over the top, too, insisting that my kid be tested, but it turns out my kid had the same infections I did:  Lyme and babesiosis.  

Your motherly instincts will carry you through -- best wishes, and keep us posted --

[danibwell]

I am wondering when you first began to notice the fat loss?  Was it before all of the other symptoms?  I can tell you that I also experienced fat loss about the face, head, hands, feet and eventually the rest of the body.  It first started with some imbalance and sharp head pains and extreme fatigue.  It began after I had metal braces put on.  I have been able to find other women that had the fat loss after braces, so I know for certain there is a metal toxicity component to all of this.  I didn't come down the Lyme road, until I first explored, metal poisoning, food allergies/leaky gut, and vitamin deficiencies.  Now, I know that these are not all to be ruled out, but all to be included with Lyme disease.  I am currently taking supplements and on a restrictive diet, which adds to the problem of fat and muscle loss, as well as antifungals for candida and antibacterial/antivirals for other nasty organisms in the body, and metal chelators to reduce my toxic load.
I have not begun treatment with a LLMD, yet.  Mainly because it has only been a few weeks since I came to the Lyme conclusion and because I just started a new job and don't want to get fired.  I am planning to have the Igenex test next week and go to a LLMD within a month.
For me, the worst part is that I think my baby has it, too.  Maybe all of my kids.

[mojogal]

You are welcome and thanks.

Having all those positive bands sure points to Lyme. I only know one other Lymie, besides you, that has that same loss of fat, ( I don't have much either.) its not common.

Sorry, if you have said this before ( my Lyme brain) but have you had an MRI of the brain? If it is MS, then you will have lesions on your brain and a good radiologist can tell the difference between Lyme lesions and MS.

I was also told I had lupus but it was Lyme in disguise.

Lyme is so confusing and frustrating because everyone experiences things differently, Lyme imitates other illnesses and so you really need a Lyme literate doctor to decipher it all.

[Murphgolf]

Your comment about being told it was MS - that is my concern with this.Since it is loss of fat and not muscle (and I don't have a lot of fat to lose) it conerns me this is an autoimmune reaction and has nothing to do with Lyme Disease. But I'm real confused on how reliable having bands 30+, 31+ and IND on 34, plus 41++++ and a couple of others on Western Blot is. It all makes sense that it is Lyme Disease until I find hardly any other people with the loss of fat symptoms I have experienced. That is where I am thrown.

Looked heavily on internet and found nothing on loss of fat happening in a pattern (redish cirle on leg, then atrorphy, redish circle on arm, then atrophy. Same for face, chest, feet, etc...  Just so confusing. Appreciate your comments and, again, was glad you did not have MS.  

[mojogal]

Yes, I had lost a lot of weight too quickly, I didn't get enough protein also.

I was first told I had MS because I had lesions on my brain and had bad neuro symptoms. Was very glad it was not MS after I saw an LLMD and found out they were Bartonella lesions.

[Murphgolf]

And your comment about these boards is correct. It gives you a place to go to seek advice, provide an answer or simply seek relief.

[Murphgolf]

Just curious, mojogal. What did the LLMD tell you the sunken sunken skin was from? If I remember from another comment on another post, did you say you had lost a lot of weight? And glad, of course, it was not MS.

Ricobord - understand what you meant about doctors telling you stressing was the problem. While we all know it doesn't help, it is frustrating when you know there is a problem and no one will believe you or help. And I mena NO ONE, including family and friends. My biggest concern and main problem is the fat loss. Still strong as far as weights lifting.All seems to be fat, not muscle. I must admit it freaks me out, at times, because I have always been very active and took care of myself. It is still getting worse.

[Ricobord]

That's what we're here for... to help each other out and encourage each other.  We know what it's like to hit low points and feel overwhelmed with symptoms and frustration. And there's the scary times, too. Many of us have had those frightening symptoms, symptom flares, and trips to the ER.

It's really helpful to exchange info with others who've lived through it.  Looking for answers really helped me, too, even after one doctor told me I was stressing myself out too much looking up stuff on the internet. Little did she realize that it was exactly the opposite. When doctors were stumped with me, finding other people who knew what I was going through was a huge relief.  

Hang in there!

[mojogal]

I was misdiagnosed with MS and lupus first. I lost 40 lbs the first month I had my worsening of Lyme symptoms (looking I had sunken skin). It was all very confusing before finding an LLMD.

There seems to be no clear cut answers any where. Very frustrating. Hang in there.

[Murphgolf]

Appreciate your comments and thoughts. Ricobord - understand what you mean about headache. Up early rather than fighting the one I have had most all night with stiff neck. I have been looking up fat loss and Lyme Disease. Thanks to both of your inputs, will look up wasting.

Don't like complaining but finding answers. Just yesterday got to me. Looking for answers and finding hope in situations is important, especially, I have found, with Lyme Disease. No clear cut answers.

This board has been a blessing thanks to people like you and others.    

[Ricobord]

My doctor's P.A. told me they do see "wasting" on a regular basis.  I wonder if this is what you're experiencing instead of ACA.  Many Lyme patients find themselves losing body fat and muscle, becoming dangerously thin.  Lyme can affect the metabolism in ways we don't really understand, not to mention messing with digestion and nutrient absorption.  There are also some who have the opposite problem, inexplicably gaining weight.  

I think you're doing the right thing getting IV treatment, although I'm not familiar with IV Clindamycin as a usual 1st choice Lyme treatment.  Usually it's Rocephin, unless, of course, you can't take Rocephin.

I did take oral Clindamycin for about 3 months at one point.  I had significant malaise, fatigue, and headache the next day. I learned later that Clindamycin has some effect on Babesia, too. Since subsequent herxes on anti-Babesia meds produced the same effect on me, I think my Clindamycin herx was about Babesia, not Lyme.  Clindamycin made my hair start falling out. It also made my teeth a bit gray, but it seems to have cleared up after switching out to a different med.  Hopefully you won't have these side effects and you'll start feeling better.  

Give the treatment a chance to start working. You have two Lyme specific antibodies that only come from having the Lyme bacteria in your body, or getting a transfusion from someone who has the antibodies.  Lyme mimics a whole slew of autoimmune disorders, but often, the autoimmune markers are negative.  I was tested for MS and Sjogren's myself.  I could easily have been misdiagnosed with MS (as some Lyme patients have) if I'd had any oligoclonal bands in my CSF.  

Some theorize that Lyme can trigger long term immune problems, but that's not the norm.  Most late stage Lyme patients do get better with proper treatment, so I encourage you not to worry too much about something that is unlikely to happen.  

Worry is stress, and stress suppresses the immune system.  Take hope in your new treatment and try your best to relax and be optimistic. I know it's hard when you're sick. Getting diagnosed and treated for Lyme is really stressful and it's hard to unwind that stress to let your body work with treatment to get better.

Keep us posted on your progress!

[Caryopteris]

If you google Lyme disease and weight loss, you will see others having the same problem.