This is topic extreme weight loss in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/133010

Posted by lymeboy (Member # 24769) on :
 
I've been freaking out for a little while now. I'm starting to unravel over my symptoms:

-Chills/sweats

-enlarged lymphnodes without pain, visible without touching them.

-fatigue

-drenching night sweats after 3-4 hours of sleep.

The biggest one of all is that at 6', I have dropped from a steady 175-180 lbs down to 150 in a few short months. I have not altered my diet significantly, but I did however move cross country and there have been missed meals, and an increase in active lifestyle.

I saw myself losing weight and started increasing my caloric intake, having hash browns with breakfast every day, and trying to eat more fatty, starchy foods. I stopped doing yoga.
I've still dropped a ton of weight.

Went to the md for checkup and labs last week. My tests, blood count, thyroid, everything was normal, except the mono screen. I've tested pos for EBV in the past. I was prescribed valtrex for that.

I cannot get this out of my head. Why am I so skinny? Why have I lost so much weight? Please tell me this is not cancer. I have a lot of the b-symptoms for Non-hodgkins Lymphoma.

I'm freaking out. I've been posting here a lot looking for answers, but I'm also distracting myself from the nagging suspicion that I may be screwed.
Is there something else that this could be? Could Babesia cause extreme weight loss like this? Bart?
 
Posted by Lymetoo (Member # 743) on :
 
Have you asked your doctor point blank to check you for Lymphoma? I would ask .. at least you will feel better having had that possibility explored.

Babesia can cause weight loss, and I'm sure Lyme can too.

I would not stop yoga. That is relaxing and SO GOOD for the body!
 
Posted by lymeboy (Member # 24769) on :
 
I am literally at almost no fat. I dunno if my muscle is wasting but my stomach is in knots. I am afraid to keep up the yoga because it is a big time fat burner. it is great for the body but I don't think i'm doing myself any favors right now.

I asked the doc about Lymphoma and I was referred to a hematologist. I tried to call yesterday but was too late. I don't know if I'll get anything this week because of the holiday. I am freaking out now. I cannot convince myself that I don't have cancer.
 
Posted by Lymetoo (Member # 743) on :
 
How many minutes of yoga?? Do 20 min just for the flexibility and balance part of it .. and the relaxation.

I read something recently about "muscle wasting" .. in regard to an imbalance of minerals or vitamins. I'll see if I can find it.
 
Posted by lymeboy (Member # 24769) on :
 
I had worked my way up to an hr of hot yoga twice/week. It was intense. I was feeling good with it, but I had a mini crash a few weeks back and I haven't been the same since. I love yoga. It was really helping so much. But I need to get this weight thing figured out before I continue. Maybe I should be using shakes and stuff as well. I am not sure but I feel nervous and I'm afraid this is the end for me....
 
Posted by glm1111 (Member # 16556) on :
 
Google weight loss and parasites.There is a post there from the BBC docs stating that when you have intestinal parasites, the body tries to rid them by shedding weight.

I believe you were on salt/c and antiparasitic herbs a while back. Maybe go back to that and increase the salt/c dose again. I add cloves(Hanna Kroeger) and Super digestaway plant enzymes as well. If you don't feel safe with Parastroy, Try another such as Humaworm.

Try not to panic and stay focused on healing and moving forward. I know it's not easy, but important in the healing process.

Hope this helps.

Gael
 
Posted by lymeboy (Member # 24769) on :
 
I have restarted the Salt-c. I was at a maintenance dose for a few months. But I kind of tapered off and kept forgetting to bring my bottle out with me. I had stopped for a while.

I stopped the parastroy because I took it for too long without breaks. I was having some digestive issues and I wanted to get that under control.

I was at a very high dose of Salt-c at one time. More than 20 g. I also did the Dr. K. parasite protocol before starting the Salt-c, which knocked me over pretty hard. Albenza made me herx like crazy, so did Alinia. Ivermectin made me queasy.

I don't know if I was reacting because of Babeisa and Lyme. I know these drugs can make those infections go crazy. Or maybe I have bad parasites. I have never seen a mass exodus, but did see some weird stuff come out.

Right now, I can't stop freaking out though. The drenching night sweats have been a problem for a few months now, without a break. The weight loss is very extreme at this point and I am eating a lot. Fatigue, chills, sweats, hot/cold. And the Swollen lymph nodes are a HUGE concern. I can't stop thinking about it. I can't get it out of my head. I almost feel like if I have a fatal disease it's a relief, because I've been in hell for 5 years. Constantly talking myself into positivity and a better future, but losing hope day by day. I know it's negative. I'm in such a bad way right now.
 
Posted by Lymetoo (Member # 743) on :
 
I can't imagine doing hot yoga. My body would not like that very much at all.

Do whatever you can to get more relaxed, whether it be meditation, yoga (check You Tube), MAGNESIUM, etc.
 
Posted by Keebler (Member # 12673) on :
 
-
With the kinds of heart issues - and neurological system & adrenal dysfunction - that lyme can cause, hot yoga can be fatal. Getting overheated can easily happen with lyme, far too easily.

If it doesn't kill you, it could damage your heart. Seriously, please be kind to your heart, it's working so hard for you.
-
 
Posted by Lymetoo (Member # 743) on :
 
yoga

https://www.youtube.com/watch?v=NJeSbfL-CzY
 
Posted by lymeboy (Member # 24769) on :
 
My body seemed to love it and call out for more until a few weeks back. I had been doing yoga for about 8 months on and off.

Past month or a little more I started going every week, then twice/week. The classes I attended were quite advanced. I really felt it was helping me heal and also strengthen my immune system. I think I was wrong.

Lymetoo, the video you posted above was like a tiny warm-up for the classes I attended. I really thought strenuous yoga was the answer. Perhaps when I'm feeling a little better I can try the beginner's vid and see if it helps.

My weight loss started before I began regular yoga. Maybe I accelerated it, but I haven't been in a few weeks and I am still losing weight.

Keebler, do you think I brought this lyme relapse on with strenuous yoga? I don't know how I got through those classes feeling so healthy for days afterward. I responded to yoga from the start. But was only able to do it maybe every 2 weeks in the beginning.

That would be a nice convenient piece of this puzzle. But the issue of weight loss and relapse and possible cancer is still making me a little insane... A lot insane.

I am so worried. I hope I can at least sleep tonight
 
Posted by Lymetoo (Member # 743) on :
 
Well, hot yoga would help a person detox .. but it can be too much if a person is ill.

Call the hematologist tomorrow and while you are out, buy some magnesium lotion. It can really help you sleep and relax.
 
Posted by glm1111 (Member # 16556) on :
 
Are you taking any herbs, abx, supplements for your infections? If not, it could explain a lot of the symptoms you listed above and account for your relapse. How did you feel when on high dose salt/c and Parastroy?

Gael
 
Posted by lymeboy (Member # 24769) on :
 
It was the most improved I've been since the start. Drugs got me far, Salt-C got me further. It made me overconfident I think. Parastroy was making me herx and then eventually gave me a stomach ache. I think I took it for like 3+ months without stopping. I got caught up and forgot about the necessary breaks.

There is also an issue of a huge cross country move, at which point I halted treatment altogether for a few weeks. When I first arrived in my new home I was feeling very good and also jacked up with a lot of adrenaline. I coasted good for a while and by the time I got back to the Salt-c, I was doing very low doses.

Looking at my lymph nodes and ever increasing anxiety, I ordered a bunch of Buhner herbs. I started taking them at full dose right away, and I think it messed me up bad. The Hottunyia tea made me sweat profusely. After a few days I had enough and stopped. Ever since I've been a pretty big mess, with fluctuating chills/sweats all day and dizziness and confusion. Bad...

Like I've said though, the weight loss has been going for a little while. Probably like 4 months but accelerating in the past two....

WAY too much to consider here. When I think about what has happened in the past 4 months I wish I had a time machine and a slow stop button. I cannot process it all and I know it has gotten me where I am health wise. Bad to beat up on yourself, but I have been doing just that over everything. I just need some peace. I wish I could undo all of this, starting with the Lyme.
 
Posted by Brussels (Member # 13480) on :
 
During lyme I kept losing weight, no matter how much I ate. I craved oily foods (due to herxes) and ate them (good oils mostly).

I was in constant hunger, but eating didn't increase my weight. I only lost it. It was slower than you, though.

Then lyme got dormant in 2009. I gained weight again, just back to 'normal' (I was 95 lb as usual).
During lyme I reached 83 lb. I'm 5.2 feet. Pretty thin....

After lyme, I started slowly gaining infections in my jaw. I had them during lyme, but they got slowly worse, because I didn't treat them (they were all under dead teeth, so I felt nothing).

Slowly, I started losing weight again. I went down to 88 lb in 5 years or so. Nothing I did could increase my weight.

I took all the dead teeth and treated cavitations. I'm not sure all jawbone infection is gone (probably not), and I'm slowly gaining weight again, since February (since I am using the Violet Ray on my gut.)

I think food allergies play a big role too. A gut with inflammation cannot digest foods well. Plus parasites, yeast, of course, make the job harder.

It is common sense here, where I live: when a cat gets thin, it has parasites. Locals just give them antiparasitic medicine and the cat gains weight again in a matter of a couple of weeks.

I see that on my cat. It takes it just 2 weeks to see her re-gaining its previous weight.

It is not only cancer that makes people lose weight, but loads of other things are possible. Lyme too!

I think if you are afraid of cancer, the best way to know it fast is ART (in my opinion).

Dr. K. has developed a way to 'see' cancer cells in this way: he knows the exact angle of photons emitted by cancer cells and can muscle test each part of your body for that in a matter of minutes.

I'm not sure it is 100% sure, but cancer exams are not successful for many parts of the body either (too hard for access). Specially when you do not know where. Dr. K. says ART is about 80% accurate.

I would go ART first (it takes just minutes), and if I get a positive, then go the 'normal' medical way (already knowing WHERE the cancer was found through ART).

Anyway, it is just my opinion. ART is non-invasive. It can also help you find infections in the jaws and teeth (very bad for your health, anyway) and help you measuring your Buhner's herbs.

I measured everything through ART, including Buhner's herbs, Chinese herbs. I could only tolerate 10% of what people tolerate, sometimes even less.

Take Japanese knotweed. While people were taking incredible amounts, I had to buy it bulk, take a tiny piece and put in water, boil it, and sip it slowly during the day. If I took more, I collapsed!!

In my case, my mouth problems alone made me feel crap (I even had heart symptoms, plus high blood pressure, then insomnia!, all gone practically on the day one bad tooth was out).

Anyway, I do hope you find a solution. I know what you feel (I was also losing muscle mass, it was VISIBLE). I don't know if it were the teeth surgeries or the Violet Ray, but the losing weight process stopped since about February.
 
Posted by lymeboy (Member # 24769) on :
 
I appreciate all of your input on these boards Brussels, thank you.

I've ordered a violet ray device, and I'm hoping it's as helpful as you say. I'm trying to think positive. Also ordered the megahydrate supplement. I have had problems with my teeth for years. Since before Lyme turned me into a zombie. My ears have been messed up for as long too. It is supposed to boost ATP. I spent hundreds on a supplement called ATP fuel, which was very helpful for me, but was too expensive to keep up with. MAybe the MH could have a similar effect.

I cannot afford any extra practitioners. Art testing would just complicate things. I think a hematologist is where I need to go next and get my answer.

It could definitely be a bunch of things. But the Swollen lymph, weight loss and drenching night sweats have me completely freaked out. I am a nervous wreck.
 
Posted by lymeboy (Member # 24769) on :
 
I've completely crashed today. I can't sit up for more than an hour. I'm trying to work, but I cannot focus, or even have the energy to move across the room.

I am so scared right now. I don't know if I'll make it through today. I feel like death. Worse than the flu. The only reason I'm typing this here is because I have nothing else to look to...
 
Posted by Lymetoo (Member # 743) on :
 
Have you called the doctor for an appointment?
 
Posted by lymeboy (Member # 24769) on :
 
I did, I won't get in until next week earliest. I also don't know if I can afford the test.
 
Posted by Keebler (Member # 12673) on :
 
-
As you are in a state of near emergency, your doctor will be assessing various things.

#1: Your blood sugar needs to be checked ASAP. If you don't have a blood glucose meter, call your doctor's office and ask how you might get a test today.

Diabetes can cause severe weight loss and many of the symptoms your describe.

Make a note of your food times so that can be considered. But, do not drive. Best to have a friend or family member take you.

I assume you are eating 3 good meals . . . and 2 -3 snacks (of a protein, veggie, low sugar fruit) a day? That is best.
-
 
Posted by lymeboy (Member # 24769) on :
 
I eat 3 meals. Eggs and potatoes in the morning. Usually avocado and gf bread in the afternoon and meat and vegetables for dinner.
 
Posted by Keebler (Member # 12673) on :
 
-
That's only part of it, I hope. Lunch seems missing (with a strong protein & veggies). Some kind of color in veggies in a.m. helps with energy, too. Nine servings of veggies per day is ideal. My concern is blood sugar lows - or highs but also getting enough calories and nutrients spread out.
-
 
Posted by lymeboy (Member # 24769) on :
 
I eat a kale or broccoli omelette every day. I added potatoes a few months back to address weight loss. An avocado sandwich and half an apple is a pretty big lunch for me.

Dinner I usually eat to fullness. Rice, or quinoa usually accompanies.
 
Posted by Keebler (Member # 12673) on :
 
-
With such extreme weight loss, have you charted your calories? This is important. That just sounds like not enough food and too low on protein that muscle wasting can happen, also dropping the weight.
-
 
Posted by Keebler (Member # 12673) on :
 
-
http://icmr.nic.in/ijmr/2006/august/0804.pdf

THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .

Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.

Excerpt:

" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."


- 20 pages - Full article at link (or web search the title if it does not go through).
-
 
Posted by lymeboy (Member # 24769) on :
 
I feel like all I eat is protiens. Eggs (3 egg omellette with a LOT of veg in it, whole Avocado, chicken, fish or beef for dinner and vegetables, usually broccoli
 
Posted by lymeboy (Member # 24769) on :
 
Haven't charted my calories, but I am sure I get more than 2500. I eat a LOT.
 
Posted by BorreliaBrain (Member # 7603) on :
 
Listen, I never usually pipe in, I mostly just lurk on this board, but this post is just too alarming... if you've lost that much weight you need to be evaluated by a very good MD immediately. This is not something for which you take advice from some health board. You should go to a very reputable general practitioner and then probably a g.i. doc as well. At least get everything checked so you know you don't have something serious.

And one more thing... the salt/C protocol left me with terrible, lasting damage to my gut. I wish I had never heard of it. They push you and tell you that you should keep going up on the salt and that any bad reaction is a 'herx', but it can cause devastating results in my experience. I still have terrible IBS from my salt/c days, and that was over 8 years ago now. My gut is almost totally paralyzed, with such severe IBS that I can only eat an incredibly limited number of foods without a bad reaction. If I were you, I would stop it immediately. Sorry, I don't want to cause a flame war, but this is my experience.

As for killing parasites, ya know, that has been an alternative craze for a long time, but the healthiest people in the world drink unfiltered ground water, and live their lives in unsanitary conditions on the ground. It looks like it is the large diversity of organisms in the gut that helps maintain low gut permeability, and people with larger diversity have much lower incidence of allergies and autoimmune conditions. So that is something to consider when taking all sorts of 'killing' drugs like antibiotics and anti-parasitics. We are not meant to live sterile lives. Again, don't want to start a flame war, and I know many people feel better with parasite cleanses, but I've never seen them be 'curative' in any post on any board yet.

Please be careful - I am not against alternative approaches at all, I rife and do other alternative stuff, but not every alternative approach is benign and without risk, and if anyone is getting much worse while doing some alternative approach, the prudent thing would be to stop it and see if that is the culprit.
 
Posted by Keebler (Member # 12673) on :
 
-
Aside from whatever medical assessment you can get ASAP for urgent matters, you might connect with this group for ideas about doctors to work with:

https://groups.yahoo.com/neo/groups/CaliforniaLyme/info

Lyme Disease.org - California on line group
-
 
Posted by RC1 (Member # 31923) on :
 
Maybe your adrenals tanked...I know of a couple of people that lost a ton of weight from adrenal fatigue, it can also cause swollen lymph nodes and crushing fatigue.

Mold will hit adrenals hard, could your new place have mold? I wonder if the salt / C was helping you with your adrenals and when you stopped it you started having trouble...

I'm doing low dose hydrocortisone for my adrenals and it's awsome. It's helped me so much. If you are interested in learning about it there is a great book called "Safe Uses of Cortisol" by William Jefferies.
 
Posted by lymeboy (Member # 24769) on :
 
I agree completely.

I have been in touch with some LLMDs.

I've contacted a few Hematology offices.

Money is now an issue.

A biopsy alone could bankrupt me.

I have to do that first to have my answer.

As for the salt-c, I don't know what else to try right now. It really helped me get past a lot of stuff.

I definitely have gut problems. I don't know about IBS, but my gut hasn't been to great since before I started the alternative stuff.

I have to do something, I don't know what to do, and I wish I could have some answers. Which is why I am obsessing here.

I really have no idea what to do. Today I was too weak to leave my bed for more than a few minutes at a time.

Keebler, I eat a lot of fresh veggies, particularly kale. I do wash them but always suspect that I'm not getting it all. Especially if you mean for parasites. How can we even tell?
 
Posted by lymeboy (Member # 24769) on :
 
I am freaked out by steroids of all sorts, but at this stage I may not have a choice. My adrenals could very well be shot.

No idea what direction to go in right now, but I have contacted a reputable LLMD that will see me soon.

I also see a hematologist tomorrow. I'm sick to my stomach thinking about it.
 
Posted by RC1 (Member # 31923) on :
 
If you read that book I suggested you will feel completely differently about it. I did. So much that I will stay on low dose hydrocortisone for the rest of my life.

Having low cortisol can really mess with your gut. It really messed with mine. I'm not having any IBS stuff anymore. At all.
 
Posted by glm1111 (Member # 16556) on :
 
Just thinking out loud here, but it seems that when you backed down and went off salt/c you got worse. Also stopping antiparasitics could have made you backslide. It's like stopping abx mid course. The infection(s) will surely get worse.

Getting a stomach ache when on the Parastroy was most likely a sign that it was breaking down any parasites. It took me 6 mos of consistent herbal antiparasitics and then salt/c to have a mass exodus of parasites.

Sea salt is a natural abx and vit c can help build the immune system.I am not a doctor, and you should certainly check out that avenue, but I would go back to doing what made you feel better.

Gael
 
Posted by glm1111 (Member # 16556) on :
 
P.S.

Also agree with RC1 about adrenal fatigue and and low cortisol + infections. The adrenals need salt and sea salt and vit C support the adrenals.

I am not stuck on salt/c as some might think. I am for whatever works. Having your cortisol levels checked might be a very good idea. There are also some good herbs to support the adrenals. If low levels of cortisol works, then great.

Gael
 
Posted by lymeboy (Member # 24769) on :
 
Yea. I suspect parasites. In fact I know I have them or at least had them. I saw them. I have recently seen what looks like Tapeworm segments in my stool, but to be honest I don't always digest well. I am really clueless as to what is what here.

The "segments" came out while I was not doing any treatments. At the time I was doubling my Probiotics and trying to heal my gut, which had been suffering. I don't know for sure what they were and I haven't seen them for a while. Definitely not since starting Salt-c again.

Perhaps I have parasites and they are wasting me away. I'm really not sure what is going on. I just know that I'm getting weak and scared. I'd like to start gaining weight soon. Nothing that I'm thinking of is helping me relax, but I have some skullcap tincture, I may get some relief from that.

Some history, I've done Salt-c for over a year. I did Parastroy along with it, because honestly it was easy. It was working too. I just didn't take enough breaks and it messed up my gut. I did get relief after stopping but it took a while to happen.

I did the Salt-c because My insurance ran out, and I couldn't do the abx I was doing. I was doing a lot. The Salt-C along with a semi-strict diet got me to a tolerable level of life. I attribute the Ginger smoothies as well, which I'll continue to have tomorrow, but less frequently. I was eating a ton of fresh Ginger daily.
 
Posted by LymeNotLymes (Member # 45544) on :
 
Babesia caused me to lose a lot of weight. Periactin saved my life. You might want to ask your doctor about it. It's about 5 bucks for 100 tablets.
 
Posted by SickSam (Member # 45330) on :
 
I've gone from 185 or so to 150 in a year. Muscle is gone and I'm really weak.

Before I had my diagnosis, I was given Bactrim for another problem and I stopped losing weight. Once I got my diagnosis, I started taking Cefzil and herxed and started dropping weight again like crazy.

Wish I had some advice, but all I can add is that my experience seems to suggest this infection can cause weight loss.
 
Posted by purplehaze (Member # 40385) on :
 
yes I have that mysterious weight loss too
at one stage I dropped 14lbs in about 12 days, seems to be big muscle fat loss all over my body, my lower neck is extremely thin, just matchstick thin at this point

scary stuff...
 
Posted by lymeboy (Member # 24769) on :
 
Periactin suppresses Seratonin. I have been suicidal at certain phases of treatment, so that sounds like a bad choice for me.

Mepron is too expensive, and I didn't really seem to get much improvement from it. So I don't think I'd be going back to that.

Zith worsened my Tinnitus.

I think I should maybe get back to Cryptolepis. And continue Salt-C, ramping up from small doses again. Not sure. It just feels like the treatments wear you down as much as the infection.

Kind of lost at the moment.
 
Posted by poppy (Member # 5355) on :
 
Yes, maybe cryptoleptis. But if salt C messed up your GI tract, is it wise to go back to it?
 
Posted by lymeboy (Member # 24769) on :
 
I think it was use of Parastroy without breaks, preceded by years of oral abx that messed me up.

I did not take enough probiotics. Now I have no choice...

I'm definitely not sure what to do. I certainly cannot do Salt-c forever.
 
Posted by Catgirl (Member # 31149) on :
 
This is just my two cents but it sounds like your body might be attacking itself (autoimmune). A medical intuitive told me to start juicing because even though I was taking all kinds of vitamins/minerals, my body wasn't absorbing them (autoimmune issues).

Have you considered an ART practitioner? They find stuff no one else does. Maybe you can find one who takes payments?
 
Posted by Marnie (Member # 773) on :
 
Have you faithfully been taking a LOT of good probiotics - varying them?
 
Posted by lymeboy (Member # 24769) on :
 
I cannot afford a whole bunch of different pbx but I have been taking a middle of the road one, maybe on par with Therelac. Maybe not as strong but decent.
 
Posted by Lymetoo (Member # 743) on :
 
I made that mistake, lymeboy, and I'm still paying for it.

I took PB8 most of the time I treated Lyme. It was NOT anywhere CLOSE to what I needed.
 
Posted by lymeboy (Member # 24769) on :
 
I definitely take better than PB8...NOW I do. I did take pb8 for a while and while I was taking abx, I missed a lot of pbx. I didn't make them enough of a priority and I know my gut has suffered for it. Now I take a decent pbx but I know I need more.

I'm broke. Especially now with all of these different docs. I really hate Lyme. HATE.

[ 12-02-2015, 02:23 AM: Message edited by: lymeboy ]
 
Posted by Lymetoo (Member # 743) on :
 
It's really hard to have Lyme and not have enough money to pay for everything. It can really bankrupt us.

I hope you can find a way to keep going with it all. Even some is better than none.

[group hug]
 
Posted by lymeboy (Member # 24769) on :
 
I know why people succumb to it. It is too expensive for even someone with a little extra. It's like a python, just slowly wrapping around and squeezing the life out of everything, bit by bit. Eventually the will vanishes.

Mine hasn't yet, but I don't have much hope.
 
Posted by Lymetoo (Member # 743) on :
 
Hang in there. There is always hope for another day .. another way to improve our situations.

I've found out so many things that are helping me and it's been quite a journey. Not things to help Lyme, but the aftermath.
 
Posted by Robin123 (Member # 9197) on :
 
Do you have an appt with an LLMD? Sometimes it seems darkest before things start to turn around. Many of us went years and years without knowing what we were dealing with. It takes a lot of hanging on - that's the work - hanging on through the symptoms to get somewhere eventually.

Your image is very strong here - impressive image, actually, re a python - maybe there could be another image you could generate to help get you through till you get some more physical assistance?

I actually did that process in art therapy sessions at a pain rehab place once - no one had any idea why I was there, including myself! I loved the art therapy sessions. They had paints, crayons, etc, and we got to express how we were feeling on large sheets of butcher paper.

I remember painting black for quite a while, then other strong colors of protest. I got that out of my system.

Then I asked myself, what is my image of myself if I am not painting black and angry red and those strong expressions?

And I came up with a bird of many colors, as my name is Robin - lots of colors for all the vibrant interests I had, and its head was down, with its eyes closed.

It was about three feet long and I hung it up on the closet door in my room. Someone saw it and said to me, "Some day that bird will fly again."

And it did. That was 1993, at a rehab place. I found out in 2006 that I had Lyme.

At least you know what you've got, or hopefully you know - maybe that too will be part of the process. But you are further along than I was, for knowing at least which ball park you're playing in, so to speak.

So I advise you to hang on, like my bird did, and find your way, whether that means ER IV nutritional feeding if you have wasting, or least testing anything to see if anything else is causing the wasting -

other things could, and it's important to find out what you're dealing with so you can deal with it better. I'd say you're in a diagnostic phase, with need to feed your body during this time.
 
Posted by Marnie (Member # 773) on :
 
A plasminogen deficiency is possible.

Some strains of Bb have a *receptor* for plasminogen (OspC type A) which it uses for its own benefit.

OspC = outer surface protein, C. This is what Bb expresses when leaving the tick and this is the protein that binds to other proteins in the tick's saliva to selectively inhibit our immune response - buying Bb time to invade.

OspC is DOWNREGULATED when Bb is hanging out

in the tick's stomach

awaiting a blood meal.

It is also downregulated by a pH level of 8.0.

(Very alkaline water.)

"The Lyme disease spirochete expresses several plasminogen-binding proteins.

Bound plasminogen is converted to the serine protease plasmin and thereby may

facilitate the bacterium's dissemination

throughout the host by degrading extracellular matrix."

Plasminogen deficient mice have reduced body weight compared to age and sex-matched wild-type animals.

This difference is not only observed at later stages of life when the

***plasminogen-deficient mice develop a wasting syndrome,***

but is observed during the growth phase in the animals and is due to a reduced rate of adipose tissue and whole body fat accumulation.


The pro and the con...

Pro...less plasminogen = less Bb dissemination.

Con...Plasminogen deficiency that runs in families appears to be an uncommon but recognized cause of an inherited clotting disease.

Your blood level of plasminogen can be measured.

But...sorry, but I must remind you of something you already know...a sudden and significant weight loss is one sign of cancer.

OspC type A is a plasminogen RECEPTOR.

"The present review focuses on the importance of plasminogen receptors in activation of the plasminogen system, which plays a key role in cancer progression and metastasis.


Thus, blocking plasminogen receptors may be a promising strategy to counteract invasion and metastasis."


Persons exposed to Bb that has OspC type A (plasminogen receptor) have a very strong inflammatory response.

And ongoing inflammation is strongly linked to cancer.

If plasminogen levels drop, there is no plasminogen to lock onto its receptor, right?

Mono...oh, yea...Bb looks to trigger latent EBV and also possibly CMV to reactivate!

In the following link...scroll down to risk factors - see EBV?!

http://webcache.googleusercontent.com/search?q=cache:SG-CCnR9_SMJ:https://www.lls.org/lymphoma/non-hodgkin-lymphoma

EBV has a plasminogen activating factor.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1536014/

Latent membrane protein-1 (LMP-1) is an EBV-

encoded oncoprotein...

LMP-1 down-regulates expression of E-cadherin,

induces matrix metalloproteinase-9 and

***urokinase type-plasminogen activator***

through activation of NF-κB and

AP-1, and enhances cell motility via ets-1 activation.

LMP-1 also induces vascular endothelial growth factor

through cyclooxygenase-2 activation and interleukin-8

through NF-κB activation.

You may need to be tested for CMV also. Different antiviral is used in addition.

EBV and CMV can indeed both reactivate and both are "common" normally latent viruses in humans.
 
Posted by lymeboy (Member # 24769) on :
 
2 years back, I had Pneumonia. I got it again about 3 months later. Since then, I have had swollen lymph nodes. My EBV levels were way up, as they are now. I don't know if they have really gone down at all. I do know that EBV is a cause of Lymphoma.

Right now I can't even get my insurance co to approve the screens that the Hematologist ordered. I am highly overwhelmed to say the least.
 
Posted by Marnie (Member # 773) on :
 
Periactin (for weight gain) maybe beneficial/helpful for those who have low MAOA levels and thus

***already high levels of serotonin***.

(Oddly...PTSD persons also have low levels of MAOA.)

Low levels of MAOA (which breaks down serotonin, norepinephrine and dopamine) = high levels of those.

MAOA R297R (Risk Allele: T)

Slower breakdown of Serotonin.

Can lead to high/low cycling of neurotransmitter.

***This enzyme requires B2 (riboflavin) in sufficient levels to function normally.***

Mutations are associated with mood swings, aggressive behavior, depression, anxiety, OCD

and intolerance of methylfolate (which increases neurotransmitters that can't be broken down by MAO A,causing feelings of overstimulation).

ACE deletions will also increase anxiety and lower frustration thresholds. Because this is on the X chromosome, males will have only one allele.

A better choice other than B2 by itself is Now (Brand name) P5P (active B6) that also contains B2 and Mg and Ca. it is not expensive.

If possible...try this very beneficial probiotics:

Lactobacillus casei strain Shirota.


Link to where to find it:

http://tinyurl.com/gvkyokl

It is called Yakult (a drink) and doesn't look to be outrageously expensive.

Your "Wally Mart" might carry it.

This will take time...daily...8 weeks use at least.

Then there is another - we can acquire the virus HHV6A as an adult and it upregulates EBV -> MS.

Oralmat. 3 drops 3 times a day -

http://www.amazon.com/Oralmat-33-fl-oz-Liquid/dp/B000IRNE5I/ref=sr_1_1?ie=UTF8&qid=1450469895&sr=8-1&keywords=oralmat+drops


Read the reviews. Run it by your doctor too.

"Oralmat has been used successfully in some cases of chronic fatigue."

http://tinyurl.com/j4f36sq

"Oralmat. 3 drops 3 times a day - may help reduce HHV-6A levels"

http://tinyurl.com/jmkbnjj
 
Posted by LymeNotLymes (Member # 45544) on :
 
Okay Marnie well I have to admit that I don't agree with the whole Prozac thing, but I do have low MAOA (TT) as well as the ACE deletions. So I find your above post interesting.
 
Posted by Marnie (Member # 773) on :
 
Take note...B2 will help. It is used to make FAD and FMN in the mitochondria.

My son takes P5P by Now - brand name (= active B6), but their formulation

also includes B2, Mg and Ca which look to work in synergy.

Mg also helps prevent Mn absorption in the bowel and Bb needs Mn.

That 50mg supplement of Now P5P, once a day, stops his seizures.

I'm being TOTALLY HONEST!

We are awaiting confirmation - genetic testing done at USF via a molecular and metabolic geneticist (dual degree) She is absolutely BRILLIANT.

There are "work arounds" to genetic problems - to an extent.

PTSD patients also have elevated theta waves which is abnormal in adults.

5HT1A receptors look to reduce theta waves.

The stress response is involved.

HBOT looks amazing for CLD (chronic lyme disease).
 
Posted by LymeNotLymes (Member # 45544) on :
 
Interesting, thank you.
 


Powered by UBB.classic™ 6.7.3