Over the past few years its been getting harder and harder to breathe. Its worse in the heat but now my breathing is so shallow at night that I don't even snore (I've snored for years).
I know I have sleep apnea but could never tolerate the cpap. I've lost muscle in my shoulders, hips and abdomen. I can't sit up or get off the floor anymore. Stairs are getting harder to climb.
I've taken antibiotics and parasitic drugs nonstop for 3 years and I'm still getting weaker. Should I just give up and admit I have ALS? I'm so frustrated and hopeless.
Posted by BoxerMom (Member # 25251) on :
Don't ever give up. Many (if not all) ALS patients have underlying stealth infections. These infections are treatable. The ALS, not so much.
I know you know this. I'm sorry you're having a hopeless day.
It's likely that your years of antibiotics have slowed the progress of ALS symptoms. That alone makes it worth your effort.
You posted a positive reaction to something recently. I can't remember what it was. Stromectol?
Whatever it was, keep going with drugs and herbs in that same class. I constantly throw new stuff at my Babesia. New antimicrobials seem to have strong effects that wear off over time. Are you switching up your program when you plateau?
Have you aggressively treated Babesia? For a long, long time? It is a bear to get rid of. I've been going at it for years.
My Chlamydia Pneumoniae titers are up, too. Both of these infections make me short of breath. Babesia causes muscle weakness. And muscle wasting.
I also have sleep apnea (I'm thin), which I know is due to Babesia. I made myself adapt to CPAP. Life is so much better with oxygen!
Do you have a GREAT doc? I hope so.
Much love, BoxerMom
Posted by mlg (Member # 35383) on :
Hi,
I agree with BoxerMom. Have you treated Babesia?
Have you tried Mimosa Puddica?
I also think we need to boost our immune system. Juicing, colloidal silver, probiotics VSL #3. Have you tried infrared sauna?
take care,
Posted by AuntyLynn (Member # 35938) on :
Sounds like classic babesia to me too.
Moreover, she's taking "Zith" - azythromycin is currently recommended (along with another drug), for Babesia.
There's a really good article at Wikipedia + "babesiosis"
Tells how to test, what the red blood cells look like (Maltese cross), and therapeutic drugs.
Babs lives in our red blood cells, which SHOULD be carrying OXYGEN!
Instead, these red blood cells are dying, overloading the bloodstream with iron, which is difficult for the liver to detox. (Acute infections will make the skin yellow!) This is what's known as hemolytic anemia.
I would take lots of Vitamin E as an aid to keeping oxygen available until the infection is under control with the right ABX (which isn't easy). Vitamin E "preserves" oxygen so that it works harder/longer.
I do not have personal experience with Babesia, but I would be really interested to know if using 400-800-1,200 IU of "natural" D Alpha Tocopherol E might help with "air hunger."
Anyone who wants to give it a try, please let me know your experience??
Also, Dr. H reported this spring that cordolepis (African herb for malaria), has worked wonders in some Babs patients who did not respond to pharma therapies.
Posted by RDaywillcome (Member # 21454) on :
I have severe sleep apnea also and couldn't adapt to the mask but I'm able to use the nasal pillows and it is so much easier.
You will feel a whole lot better with sleep. They told me I woke up 67 times in 60 minutes, now I know why I was always so tired.
Posted by poppy (Member # 5355) on :
The muscle wasting with babesia is overall symmetrical, leading to an anorexic state, at least in some people. This improves with babesia treatment
The muscle wasting with Lyme/ALS is asymmetrical, less of a general weight loss than muscle loss. If it has not gone too far, this improves with treatment, usually lower dose than normal.
ALS is a neurologic disease, so it is just one of the manifestations that lyme can produce. Not to say that all ALS is Lyme....it may be another infection.
[ 09-01-2012, 12:18 PM: Message edited by: poppy ]
Posted by Catgirl (Member # 31149) on :
Aunty, thanks for posting about the vitamin E (that's a great idea)!
2young, it really sounds like you have babs. I have it and your symptoms sound just like mine. My breathing is very shallow in the heat (causes headaches), especially humidity.
I used to have sleep apnea, but it went away (treatment?). Has your LLMD ever treated you for babs? This disease is dangerous (don't ignore it--push for treatment). I wonder if babs left untreated turns into ALS (just speculating here).
Posted by AuntyLynn (Member # 35938) on :
This video bears repeating ... Dr. Terry Wahls, whose MS had relegated her to a wheelchair.
She developed a diet in conjunction with the latest research on brain deterioration. (Typical of Huntingtons, Parkinsons and Alzheimers ... all similar to the deterioration found in ALS and neuro Lyme!)
Protomyxzoa also causes air hunger and extreme fatigue. It is linked to ALS and other auto immune diseases and it is often confused with babesia. There are a few differences that help you distinguish one infection from another. You can have both infections but the dominate one will manifest the most symptoms.
With babesia you want to oversleep. With protomyxzo you get insomnia. They both cause headaches behind the eyes. Babesia causes large muscle pain and cramping. Protomyxzoa causes pain in the bones and muscles - I have had back cramping with it. It can also cause pain in the teeth.
Both infections can cause episodes of dry unproductive cough or hoarse voice. They both cause hot flashes and sweats. Protomyxzoa causes nasal congestion. Promyxzao causes muscle twitching, like bart.
They are using antimalarial drugs to treat both infections but there are treatment differences. Protomxzoa multiplies 100 times faster with lipids (fat) and arginine so a low fat vegan diet is recommended. This is making a huge difference for those of us who are doing it.
Stromectol (ivermectin) is effective for some people with protomyxzoa. It worked wonders for me. Dr. F reported one patient diagnosed with ALS made huge strides with stromectol.
Given your symptoms and diagnosis of ALS, I would try the diet and add in antimalarial drugs pulsing ivermectin to see if you improve.
You should be tested for the methyl cycle mutations which will also trigger auto immune and neurological diseases. Read up on it at the heartfixer.com site. Most people who are chronically ill have the CBS mutation. Animal protein produces enormous amounts of ammonia. Sulfur in food is a big problem.
Once you have had this test done, you know what your body needs. It isn't a dangerous guessing game. If you have the CBS mutation and you juice kale, spinach, cabbage and other high sulfur vegetables, you are making things a thousand times worse. If you take supplements like milk thistle or MSM, you are adding to the problem.
If you have the MTRR mutation, then you are difficent in B12 which can cause a lot of your symptoms. Normal B12 makes things worse. You need the kind your body can use, which depending on your COMT status would be methyl B12 or Hydroxy B12. Hydroxy B12 has been shown very effective in chronic fatigue.
Do you have hyper coagulation, high iron or any other problems making the perfect storm for disease? We need to be more specific to our individual needs if we are going to beat these diseases.
Posted by Catgirl (Member # 31149) on :
Great link again, Aunty!
Neff, Dr. Wahls in Aunty's link above says that the brain, liver and kidneys need sulfur to remove toxins from the bloodstream. If you can't have sulfur (or it looks like milk thistle too), what are you taking to remove toxins?
Posted by AuntyLynn (Member # 35938) on :
Excellent post Nefferdun!
There are so many variables in trying to battle TBDs, and we are all genetically different, so testing for whatever is possible is key to individualized treatment and success.
Posted by Lymetoo (Member # 743) on :
Have you been evaluated for Myasthenia Gravis??
I do agree that it could be babesia.
Posted by lululymemom (Member # 26405) on :
It does sound like babesia.. I agree with migs.. Colloidal silver would be worth trying.
Posted by cozynana (Member # 34270) on :
AuntyLynn and Nefferdun,Thanks for taking the time to educate us.
I am still very new at this Lyme thing and need all the help I can get.
I have huge allergy, methylating, yeast,fungus and parasite issue.
Any suggestions about the order to go after all of this?
I have been on two parasite meds, nystatin, diflucan, ceftin, and on a very restrictive no/low carb diet.
I think I have done some good things, but need to get the rest of the story figured out.
I am afraid of the big ABX's because I have talked to way too many people who have used them for years and not any closer to being well, and many more ill than before.
I think my hang up is that a DO told me perscription drugs tear my body down, herbs and minerals build a body up, so I should always use the most natural devices available to treat this disease.
He also told me that herbs are just as powerful or more than ABX's. Do you agree?
If not, how did you protect yourself from the damaged done to stomachs, etc from taking ABX's that are very strong.
My digestive system is already a mess and know if I take long term ABX's my systemic yeast, fungus, and stomach issues will explode.
Posted by canefan17 (Member # 22149) on :
I'm positive I have early stage ALS too. My Uncle is dying from it.
I had a traumatic head injury in 2004 (back of skull on concrete) that landed me in hospital.
I think infections have really attacked this damage spot over the years.
I have Myco p, Bartonella, Babesia, Lyme, Erlichia, and surely other infections. I have methylation issues - MTHFR, among others. Muscle twitching is INTENSE for me. Almost zero things have remedied it (Rifampin did for 3 months and then stopped working for me)
I feel pretty hopeless like you as well. I've seen my neck(adams apple) move a few inches to the left... because my left side is deteriorating. My family and g/f can see it (I'm only 28 btw)
I weigh 135 lbs at 5'11 - I'm skin and freakin bones... it sickens me.
I just hope I get a good 5 more years out of life because I know I don't have a long time to live and I'm quite certain there's not much hope (trust me - I'm level headed right now)
Posted by droid1226 (Member # 34930) on :
I think everyone on this board can convince themselves they have ALS. The symptoms are there. Since it comes from brain damage caused by infection or trauma, all we can do is fight the infection from spreading and or getting worse. ALS is in fact just the diagnosis of exclusion of everything else.
ALS twitching is also very specific in one spot, not all over the body.
Sad that we know more about the cause of these deadly diseases than the best dr's in the country.
Posted by canefan17 (Member # 22149) on :
What do you mean ALS twitching is very specific in one spot?
Posted by Rumigirl (Member # 15091) on :
That's not true that ALS twitching is only in one spot. I know, my father-in-law died of it, before I knew anything about Tick-Borne Illnesses.
And, no, "everyone on this board can convince themselves they have ALS," that's not true either IMO. ALS is a pretty advanced stage of illness, and it's effects are pretty terrible and specific.
I have a special concern for people with ALS presentation.
Do both of you know that there is a clinic in CO that deals specifically with people with ALS, who have Lyme? They are carrying on the work of Dr. M, who has it himself, and is surviving. Please, please consider going there, if at all possible, or at least speaking with them on the phone first to consider it. (You don't have to move there).
I do know that once someone is in a wheel-chair or can't breathe on their own, it's too late for them to help. Short of going to the clinic, you need the very best LLMD & other drs, who have tons of experience with TBD's, and specifically with ALS.
Yes, it does sound like Babesia/Protomyzoa, but it also sounds like more than that to me. In both of your cases, you need to pull out all the stops. (I'm not suggesting that you haven't been). It saddens me deeply.
Oh, and, canefan, once when I spoke with the practitioner at the clinic, she said (about someone with "ALS" in their 20's), "that's not ALS!!" Meaning, I presume, that in someone so young, it IS TBD's.
Posted by jdp710 (Member # 34017) on :
Hi 2y2dmom & canefan17. I'm sorry to hear that you're not doing well.
There are so many different areas to look into that I'd recommend to contact Dr. L at www.royalrife.com or order a saliva sample ($25 - $150) to see what are the biggest areas to focus on. http://www.royalrife.com/test_order.html
For example, prions could very well be high. 10% of the people Dr. L tests for test high in prions which cause all sorts of issues. Issues that are similar to way you both describe. I had no idea just how significant they were for me until I started to treat for them.
"These results suggest that ALS may be similar to prion diseases"
hope this helps
Posted by Caniggia (Member # 30479) on :
quote:Originally posted by 2young2dieMom: Over the past few years its been getting harder and harder to breathe. Its worse in the heat but now my breathing is so shallow at night that I don't even snore (I've snored for years).
I know I have sleep apnea but could never tolerate the cpap. I've lost muscle in my shoulders, hips and abdomen. I can't sit up or get off the floor anymore. Stairs are getting harder to climb.
I've taken antibiotics and parasitic drugs nonstop for 3 years and I'm still getting weaker. Should I just give up and admit I have ALS? I'm so frustrated and hopeless.
Are you taking something like Tinidazole?
Posted by droid1226 (Member # 34930) on :
What I meant is that the twitching from ALS is not random throughout the entire body, it is generally a result after the muscle starts dying.
This excerpt is from "Journey with ALS"
There is a BIG difference between the BFS and ALS twitching. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink.
This is a SECONDARY action and it ONLY happens AFTER the muscle has started it's dying process, NOT before. So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time.
Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has.
You won't have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS.
ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.
I think it's important for us to fight lyme primarily and if ALS is the result, then worry about it later..Not while our bodies are overstressed and sick as it is.
2young...The point being-NO you should not give up and admit you have ALS. You tried alinia and that helped temporarily, so you know there the lungs and diaphragm are not continually in decline.
Posted by chastain (Member # 34236) on :
I concur with what droid1226 has mentioned. I had a neurologist who deals primarily with ALS patients here in CT tell me that with ALS the hallmark is that all twitching is very spot specific and that it is always accompanied by significant weakness. 2young, I worried for a very long time that I had ALS and sometimes I still get frightened, but I agree with what others here have said that treating the tick borne infections that you have will quite probably be the key to improving your health.
I would not give up. I would continue to treat the lyme and coinfections. I know that hopelessness creeps up so easily, but the fact that you did see some improvement on meds leads me to believe that you can gain some of the strength back that you have lost with time and prolonged treatment. Treatment and progress can be glacially slow at times, but it isn't a reason to feel devoid of any hope. Keep fighting. Jess.
Posted by canefan17 (Member # 22149) on :
I get the twitching in one spot for long time... and then the muscle turns to a knot! I have SOOOO many knots in my body and I knew what twitching did *it's constantly contracting the muscle until eventually it dies*
I've read Bartonella hensalae can cause those nodules under skin. But for me I think they are dead muscles that just knotted up. I used to try using a foam roller to "myofascial release" them. But it hurts SO bad to do that.
Also Dr K (in Wash) once said he thinks ALS is Bart/Myco.
My Myco numbers were 1550 IgG lol
Posted by Rumigirl (Member # 15091) on :
Yes, I agree, don't give up! You need to treat. BUT it's important to have an LLMD and other drs who have very specific experience (and a lot of it!) with ALS/Lyme. The treatment for ALS/Lyme is different, and needs to be closely monitored by someone who has that experience, such as at the clinic I mentioned.
Thank you, droid, for explaining what you meant in detail.
As to Dr. L and rife---with all due respect to Dr. L and to rife, he is not a clinician; he doesn't work with patients. When you have ALS/Lyme, this is not a time for do-it-yourself treatment. Either too much or too little treatment, or not the right kinds can spell the difference between recovering as much as possible or not making it.
Unfortunately for both canefan and 2young2die, it sounds like they do have an ALS/Lyme presentation. I'm not making a diagnosis, of course! I'm simply trying to urge caution with do-it-yourself remedies.
And, yes, Mycoplasma is almost always involved with ALS/Lyme, according to the top LLMD's who work with it.
Posted by cht girl (Member # 26170) on :
Hi 2 young,
Have you had the opportunity to try longterm IV antibiotics? My symptoms have closely resembled ALS since the beginning, with muscle twitching being near constant until this spring. I have been on IV antibiotics continually since June 2011, and it took 7 to 8 months before most of the twitching went away... I also had muscle loss in my shoulders/chest/trunk and weakness in trunk musculature making sitting very laborius at times. Since the first of the year, I have made steady progress and now only have an occasional "twitch", know longer have trouble sitting, have great stamina and have been able to put on a little weight. If you have any opportunity to try LONGTERM IV therapy, it helped me round the corner when orals 2 1/2 orals only slowed my symptom progression. Don't get discouraged.... I wish you better health.
Posted by canefan17 (Member # 22149) on :
Rumigirl
What abxs in your opinion are a no-go?
And which ones have you heard work well?
Just curious
Posted by AuntyLynn (Member # 35938) on :
cht grl -
That is a very encouraging story! And another testimony for LONG TERM IV ABX!
Are you still on IV now? What? And what dose? (If you don't mind sharing details.)
How long do you think you had Lyme before the oral treatments began?
Inquiring minds would love to know!
Posted by 2young2dieMom (Member # 25434) on :
I started with iv ceftriaxone for 9 months. It did help my strength alot but I'm very allergic to it. I had a severe rash reaction and my current llmd is afraid to use it again.
I tried orals in the same drug family with a violent reaction. I'm also allergic to penicillan.
I can tell I am still losing muscle slowly. The breathing difficulty really scares me. My original ALS dx gave me a prognosis of 10 -15 yrs to live.
I've been on every drug there is. Alinia helped the first time but not the second time.
Posted by Rumigirl (Member # 15091) on :
2young2, Did you try other IV abx? If not, why not?
canefan, rocephin for starters (IV), but at a lower dose. Have you done long-term IV abx? If not, why not?
Of course, you have to deal with the illness from all angles, and go after all the infections (not all at once, of course).
Anyone who has an ALS presentation, IMO, should be on IV long-term, unless they can't handle for some reason.
Of course, these are my opinions, and I am not a dr. But it is also what drs who are experienced in working with ALS/Lyme say and do.
Posted by Catgirl (Member # 31149) on :
Wow. I read Neff's post the other day, but it just didn't sink in. For some reason, I felt compelled to come back and read it again today. After reading it, I realize that I probably have protomyxzoa, not babs (great description, Neff). Or maybe I have both, but I think protomyzxoa is rearing it's ugly head.
I tried my own little test to see if I have it (while waiting for my test results). I ate a bunch of nuts last week (more than the 3 or 4 that I usually have each day) and I went down hill fast. I felt terrible shortly after eating them. My babs symptoms increased dramatically (what Neff posted above for protomyxzoa and more).
I never realized the symptoms for babs were so similar to protomyxzoa. The stuff I'm on for babs does help, but if I come back positive (pretty sure I will), I will be glad to get the stromectol.
I don't know how I'm going to do the diet. My carnitine and iron are really low, and I'm usually battling yeast. :(
Posted by 2young2dieMom (Member # 25434) on :
The only thing I've ever tested positive for is protomyxzoa. My llmd thinks it is covering up other infections with a biofilm and that's why all my ingenix tests were negative.
I'm trying mepron again soon. The alinia started to work again this week but I've been pulsing it for 3 month so maybe its time to switch.
Wish I was getting stronger. My muscles are deteriorating so much that I can hardly walk around the block
Posted by lyme-o (Member # 35115) on :
hubby presents with ALS symptoms. Hes been on IV drugs since December. Usually start to work and then either liver enzymes elevate of allergic reaction or just plain plateau. So we stop for a week or two, and then that particular drug never starts to work again
Posted by Rumigirl (Member # 15091) on :
2young, have you been clinically diagnosed with other infections, and therefore treated for them, I hope?? To go only by tests isn't a very good plan, considering how inaccurate the tests are.
Does your LLMD have A LOT of experience with ALS/Lyme? That's what you need.
Posted by Catgirl (Member # 31149) on :
2young, have you tried doing a low fat diet? Dr. F says that reducing fats helps make protomyxzoa minimal (barely there), so maybe the meds can then get through to kill the other stuff (just a thought). I wonder if protomyxzoa is at the root of ALS.
I have yeast issues, so I looked at Dr. F's 15 mg and laughed. I knew there was no way for me to eat that little and survive eating a strict anti yeast diet. So I cut out nuts, avocado, eggs and fats (yes, fish oil too), and only ate a little meat. I felt better within a day or two. My pain left too (knee pain). Babs symptoms went from what sucked for me to minimal.
Maybe eating this way will slow down progression.
[ 09-19-2012, 05:34 PM: Message edited by: Catgirl ]
Posted by map1131 (Member # 2022) on :
Please don't forget about your heart. I made the mistake of thinking my heart wasn't effected by this illness.
When this started I was a young 42 year old. It took 13 years to discover heart damage. I didn't have the obvisious heart palps.
It wasn't until breathing issues came about in the last several months before coronary heart disease was dx.
Ladies especially, heart disease can be the silent killer. Lyme & co can damage the heart.
Pam
Posted by Mathias (Member # 5298) on :
Myco = ALS IMO. Try talking to the ALS association about any correlation between the two. They completely blow you off. An infectious cause would be too simple..... Frustrating. I was one limb away from having ALS as my diagnosis. If they did not find the mycoplasma I'm convinced it would have spread to my other limbs and I would have got the official diagnosis. Never give up!
Posted by cht girl (Member # 26170) on :
Aunty Lynn,
Sorry it took so long to get back to this thread. I am still on IV antibiotics, just wrapping up month 16 of continuous IV antibiotics. I tried IV rocephin for 2 1/2 months, had an allergic reaction, and switched to IV Azithromyocin. My LLMD had me infuse 4 days of week, because Azith has a 48 hour half life (48 hours later, 1/2 the dose is still in the bloodstream), and I pulsed Tindamax with it.
I have had lyme since 2005 at least, and was having low blood pressure, near fainting, low respiratory, unstable CNS symptoms before starting IV as well. I'm happy to say I am weaning from IV meds over the next couple of months....... I will most likely continue Samento and Banderol as I try to wean from antibiotics...
I hope this combination helps others as well......