posted
I have lost alot of weight, and seem to be getting skinnier and weaker everyday. Today I feel like there are weights strapped all over my body and no muscle to move them.
I am still having weird breathing issues, swollen lymph nodes, back pain, chest tightness etc....
People are asking me if I've been screened for cancer?
I hate to put my problems up here since there are many worse than I. I am only 28 and I need to provide for my family and that is getting harder and harder.
I also have no health ins. I just can't tell if it's lyme anymore or if its more..
I am being a good boy when it comes to my diet. I am eating like Dr B. suggests.
Please help........Rich
Posts: 413 | From nj | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I dont know your story, but I know you have been around for a while. And sounds like things are far from improvering.
Just trying to make you smile---not be snide. how do you spell snide anyhow?
Most folks are at the LDA/ILADS conference this weekend, so you might not get many responses. dont be discouraged though---people will answer if you keep bumping it up.
I know that lyme can make a person gain or lose weight. And the other symptoms you describe can easily be lyme too. But as you know, Lyme is pretty much a differential diagnosis---you have to rule everything else out--even if your western bot is positive it is a good idea to rule out all other diseases because you wouldnt want to NOT treat something and think it is lyme. Many of us has more than one illness to face.
that being said, what have you ruled out so far? what tests have been run and what were the results? If you have no insurance, you might be eligible for some free screenings. ??
I am so sorry for your pain and suffering. This road is so lonely and hard--I am glad you came here to let us know how you are even if it isnt good news. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Drive, ride walk or crawl to a "good" LLMD and see if any treatment will make your condition better or worse!! Then you 'know' which way you HAVE to go to make headway!!! Its NOT easy but you HAVE TO just do it!!! 2 cents(pretax),,, worth from --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Well so far I've had the following: :hiv test neg several times :cbc all normal most recently august W/B negative 7 times through usual labs, positive through igenex 1 time :Had a doc diagnose me with copd in 05 from a chest x-ray. (never smoked)???? : Another doc says no way??
Here is a quick rundown of my history. Found tick 6-04 removed and took 10 days of zithro
Symptoms started 1 month later, went to every duc I could find and none of them suspected lyme since elisa and w/b kept being neg.
Went to llmd tested pos w/b through igenex (igm)
Took biaxin 500 mgs for a month Switched to ceftin 1000mgs for 3 months Switched to doxy 400mgs for 1-2 months Was still not symptom free. Had low dose doxy for about a month most recent.
LLmd wants me to try rifampin 900mgs for bart, but alone?
I dont know.......
Posts: 413 | From nj | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Yes---rifampin most likely should be taken alone for bart. The reason for this is that it interacts with many other ABX and drugs. It lowers the blood levels of Macrolides(biaxin/zith/etc) and floroquinolones (cipro/levaquin) and doxycyline. It also lowers the effects of muslce relaxers, anti-anxiety meds, and pain meds so please be aware if you are taking things to lower your pain level--they may not work as well with rifampin!
Did you test pos for bart? it doesnt really matter actually--but curious. I am taking rifampin for bart right now. after my most recent relapse no treatment has helped, but then bart was found---hoping it helps make some HEADWAY!!
sounds like you are on the right track here. Sounds like you have a good LLMD. If you feel like you are are continuing to lose weight and strength you should contact him/her and see what they say.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
well, I'm not sure if my answers/comments will help any, as there are many more lyme saavy posters than myself... but i can tell you that I can relate to everything you have mentioned.
I too, lost a lot of weight when i first came down with lyme in 2002, spring. I went from a healthy 125 (5'5"), and quickly spiraled under 90 lbs...
It seems most people gain weight. anyway, everyone, including my doctor, didnt think I would make it (what ever that means)... I pretty much laid in bed for 2 years going to different doctors who could never find anything... all the typical stories inserted here...
One strange thing... in the first year of laying in bed "dying", blood started coming from my ear, dripping very fast, and lasted for 3 days! I was unconcious at some point and woke up 3 days later in a puddle of blood on my pillow! ( was married at the time and why he never took me to the ER is a whole other story... he was an *** to say the very least!)
my point is , some very strange things happen from this disease, and I think especially when you have co-infections... babesia is something i have as well and i think that has been my weight issue. BTW- I scooped up a cup of the strange blood from my
ear(strange because there were things in it... i
know this sounds gross, but, almost like skin
folds simular to chicken skin...discusting, and
very scary) so I bring it to the "doctor of the month" who I
happened to be seeing at that time, Stanford doctor, (now i know better!) and she picks it up with some long prongs,
Yells out "eeewwwH" and proceeds to chuck it into the trash marked "biohazard warning"... jotting down some notes on her "hello Kitty" note tablet (sorry, i couldn't resist)
and sends me to a shrink...
claiming that she has had the "priviledge" of
disecting many cadavers in her studies and the
human body can produce some very strange things. She wished me well...
i wished her license revolked for shear stupidity...
It took 2 more years of hell b-4 i finally made my way to a lyme doc, whom i love, and he knew in 5 min. that i had it...
I had several tests during 2 years...
INCLUDING 4 neg. elisa tests (even when i was stage 3 with bells palsy!), no bite or rash, or ring... but everything else we all mention here.
The first time i started to feel any sort of relief... and i think i have been on nearly everything i see posted in the antibiotic dept.
I too, have no insurance, (wont get into that) but as i was saying,,, relief for me came from I.M. rocephin shots ... i havent been able to afford the picc line but the shots have allowed me to type, and drive past my driveway without getting lost. and also just be ok for 2 or so hours a day... and ill take it for now.
If you don't have a lyme doctor, YOU NEED ONE! they ,and the people here have your answers, if you have the will...
p.s. even sometimes, you may not have the will when all seems to much, but thats when you talk to people who can relate... like us! take care...
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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posted
I was going to mention babesia, too. It can cause a great deal of weight loss. I have it (seronegative, but I respond to treatment) -- it can be almost worse than Lyme at times -- and of course, the combination is horrible.
I feel so deeply for you, and wish I had something comforting to say....these diseases really take a huge toll on the body. For what its worth, I feel like I am dying sometimes, too -- and I know it is lyme/babs related.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
From experience, I know it feels like you're dying but you're not. Get to a LLMD ASAP if possible.
Posts: 57 | From the middle of a pandemic | Registered: Sep 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I agre with NC
Get to a LLMD as soon as possible. if you suspect lyme it can kill you (read the obit section over in general)-
posted
you may feel like your dieing,but trust me the human body is stronger than you think.I've been there.I was in the hospital everyday for i dont know how long getting just a bag of iv liquid,because i was to sick to eat,and my body was spasming up tight,when i would start getting the iv,all my muscles started to release,and they sounded like someone walking in wet boots.Try to get your doctor to give you some klonopin,,,it is great for spasms,and anxiety.It will also give you somewhat of an appetite.But definatly get to a doctor that prescribes 2 antibiotics at once to cover co-infections,some llmd's have people on three things at once.Also get tested for co-infections,if you can..As dana said it is possible to die but think positive and get to the doc,somehow.You probably need higher doses of meds than what you are taking.I was on biacin,also ceftin,but im sure it was 500mg,2 times a day as someone else said.You also gotta take acidolpholis tablets ,i do it 3 times a day.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
I was going to suggest Babesia too. Sounds very familar to me. Had most of those symptoms and still do at a lower level.
My Babesia symptoms are trouble breathing, heavy legs, rib pain, spleen pain, nausea, wavy vision, headaches, tingling in my arms and legs, very messed up brain, and dizzyness.
When I first got sick I lost alot of weight.
You need a lyme doctor. If you don't have much money there are lots of programs to get free medication.
If you have cancer I think it would show up in the blood work. I thought I had cancer too when I first got sick but it turned out to be lyme and babesia(thank god).
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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posted
I have been there too Rich...I second and third the babesia suggestion of the others here.
I was where you are now almost two and a half years ago.
I took Mepron and my appetite came back and the air hunger and chest pain started to disappear.
I know you are scared right now. Please don't let people's comment scare you or create anxiety. I thought for sure when I had not yet seen a lyme specialist that I had MS or Cancer.
I had lost 50 lbs., was numb from the waist down, had shooting sciatic pain, was bleeding from places you shouldn't, the list goes on...
I got to an LLMD, got aggressive treatment with Mepron and antibiotics and now I am much better.
Hang in there!
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Dont forget about Flagyl.
Not sure if this would help, but it is worth a try bringing it up.
Flagyl did wonders for me in lyme treatment, but I had lyme for 15 years or so before treating.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Re: weight
You MUST have a healthy gut to be able to ABSORB and MAKE nutrients that your body needs to fight.
Your significant weight loss could very well be attributed to a lack of your ability to ABSORB nutrients.
When you took abx., did you take probiotics? Lots?
Healing starts in the gut.
Get it healthy.
Think: PROBIOTICS...LOTS...LOADING DOSES...one hour before a meal with a full glass of water. Timing is important...very.
Do your BMs have "undigested" food that you can see in them?
Cancer takes TIME to develop...usually.
Likely NOT CANCER !!!, but...
Watch PSA levels. These are protein markers for prostate cancer. Notice I said PROTEIN. I think the body is actually using these proteins to try to fight.
Breast and prostate cancer follow both the glycolysis and cholesterol pathways...which just happens to be the same pathways Bb takes.
This USUALLY does NOT happen in early lyme.
Re: the breathing issue:
"Inhaled nitric oxide
has been shown to help survival and recovery from paraquat poisoning, which produces lung tissue damaging superoxide and hinders NOS metabolism."
Nitric oxide -- not the same as the "laughing gas," nitrous oxide -- is produced by the body.
Among other things, it increases blood flow and gets more oxygen into circulation.
For those not "medically inclined"...here is an explanation of NO simplified:
Biology, Chemistry, and Therapeutic Applications of Nitric Oxide from Medscape Critical Care
Inhaled NO Gas in the ICU Setting
In a session focusing on the role of inhaled NO gas in pulmonary diseases, Warren M. Zapol, MD, of Massachusetts General Hospital, Boston, Massachusetts, provided an overview of studies on the use of inhaled NO gas in critically ill patients.[7-11]
NO gas produces selective pulmonary vasodilation and bronchodilation, thereby reducing pulmonary vascular resistance (PVR) and pulmonary artery pressure (PAP), and improving ventilation/perfusion matching and pulmonary oxygenation.
In a landmark study reported in The New England Journal of Medicine in 1993, Dr. Zapol and collaborators in Berlin described the use of inhaled NO gas in a series of 10 patients with adult respiratory distress syndrome (ARDS).[8]
ARDS is characterized by pulmonary artery hypertension, intrapulmonary shunting, and arterial hypoxemia. Inhalation of NO in these patients with severe ARDS reduced the pulmonary-artery pressure and increased arterial oxygenation by improving ventilation/perfusion matching without producing systemic vasodilation.
In a perfect world...having your blood gases measured would be helpful to know.
A pulmonologist might be able to help.
Rich, you left out an important (very) fact for others...you told me you were given steroids.
Those of us on this board a long time know that steroids spell major trouble for those with lyme.
Major.
For your consideration:
Effects of Omega-3 Polyunsaturated Fatty Acids on Inflammatory Markers in COPD*
Conclusion: We suggest nutritional support with an omega-3 PUFA-rich diet as a safe and practical method for treating COPD.
Chest. 2005;128:3817-3827.
(Barleans DHA Omega 3s - 90 softgels for $21.59.)
To restore energy production to damaged cells in the lungs and relax bronchial airways, the following nutrients are suggested:
� Coenzyme Q10: assists in cellular respiration and acts as an antioxidant
� Alpha-lipoic acid: functions as a cofactor in energy production, acts as a free radical scavenger, and helps regenerate the effects of other antioxidants
� Acetyl-L-carnitine: transports lipids into the mitochondria to be used in the production of cellular energy
� Taurine: may improve breathlessness and increase cardiac blood flow
� Magnesium: is a cofactor in over 300 enzymatic reactions in the body and relaxes bronchial muscles
� Potassium: weakness and fatigue are symptoms of deficiency. Consult your physician for blood testing.
Depletion of fat-free mass (FFM) significantly contributes to decreased skeletal muscle weakness and impaired exercise capacity in patients with chronic obstructive pulmonary disease (COPD).
FFM wasting suggests disturbances in intermediary metabolism, confirmed by data showing
profound alterations in the skeletal muscle
amino acid (AA) status
in COPD at rest.
Am. J. Respir. Crit. Care Med., Volume 163, Number 4, March 2001, 859-864
When you breakdown fats, ketones happen. This makes your system incredibly acidic in order to fight an infection.
If you feel you MUST go the "traditional" route:
WMJ. 2006 May;105(3):24-9
Tiotropium is an *anti-cholinergic* bronchodilator that can be taken once a day for treatment of chronic obstructive pulmonary disease.
PMID: 16749321
IMO...avoid Flagyl right now. It works by INCREASING ethanol (alcohol) levels which alter proteins (Bb's outer wall is made of proteins).
All spirochetes ferment sugar to ethanol. This is damaging the liver in addition to choline (a B vitamin) levels and many other nutrients dropping.
This ethanol(alcohol) messes with the amino acid, taurine...and you already have an amino acid imbalance happening.
"We have found that taurine will protect against the fatty liver caused by repeated administration alcohol. This protection occurs whether the taurine is administered with the alcohol or after the alcohol administration has stopped."
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