My name is Byron and I am having a really hard time. I'm 18 and house/bed bound wishing I could die. I am seeing a LLMD in Springfiel, MO. He has been treating me for three months now and I have had no improvement. I started on oral ceftin then to Biaxin/Plaqunil, now back on Cefting. I start Zithromax soon. I have a big problem right now. Whenever I herx, I can usually tell and when I back off the abx I start to feel a little better. But NOW!, THis whole week I have been steadily getting worse, so I backed off the abx and still steadily getting worse to where I am almost on the floor in pain. My main symptoms are chronic headache, chronic nausea (lost 45lbs.) muscle tightness, insomnia, joints, see floaters, hypercoagulation, depression, and more. I got sick around Nov. of 2005 and saw my LLMD First of Jan. this year. Can someone please help me!!! I'm ready to roll over and die. Posted by Carol in PA (Member # 5338) on :
Byron, Welcome to LymeNet. You have a good doctor.
Are you on any medication for pain, nausea, hypercoagulation, depression, insomnia.
Are you doing anything to help your body detox the poisons from the dead spirochetes? Supplementing glutathione is useful.
I began taking systemic enzyme therapy, which reduced the headaches somewhat.
Fish oil and magnesium supplements will help to reduce the depression and the pain.
Carol
Posted by ByronSBell 2007 (Member # 11496) on :
I am doing IV glutathione once every 2 weeks along with b vitamins, magnesium, clacium. I am also on testosterone and cortisol. I am using folvic acid for the hypercoagulation. I am also taking multivitamins and that is about it. I start 250 mg Zithro in a couple days. I am just having a really hard time understanding what is going on with me. Ever since I have seen my LLMD I have been worse but my pain is like a rollercoaster and doesn't know where it is going. I can herx then back off and start feeling better. Well now I backed off and am watching myself get worse every day of the week without touching an ABX. I am pulling my hair out right now! Posted by lou (Member # 81) on :
If it gets too bad, then stop meds briefly and then ramp up slowly. This might help prevent the worst of the herx. But it sounds like you are being hit with symptoms and herx at the same time, which is typical of early stages of treatment in someone with a high germ load.
You should mention the nausea at your next appt. That is a lot of weight to lose, especially if you are not overweight. I lost a lot of weight, but it was from babesia, not from nausea.
Some people find that epsom salt baths can help with herxing. If nothing else, it replenishes the magnesium which most lymies need. Not too hot, not too long. Any support groups in the area you could go to?
Posted by ByronSBell 2007 (Member # 11496) on :
I dont know of any support groups in my area... I just cant seem to get rolling with my treatment. It seems something is just crumbling it up and I am not able to take steps forward... Posted by von (Member # 8333) on :
Byron, Boy I hear you about symptoms being confusing. Trying to figure out what is making you feel so bad, herx or the illness.
You will get good advise here. Hang in there, things do get better. You are in the roughest part. Those ketes know that you are on to them.
I tried and she never ended up sending me the invite....?
I Gotta Figure Out what is going on! I am in critical pain and dont know why, havn't taken an abx for 3 days.... and still continuing to worsen
Posted by TerryK (Member # 8552) on :
Call your LLMD and at least let him know what is going on with you. My understanding is that if you get worse immediately after going off abx it is likely a co-infection however your description makes it sound like it could be yeast.
Are you taking probiotics? I didn't see them listed so if you aren't, I would strongly urge you to start immediately. Also drink kefir to replenish your gut bacteria. You may need supplements or prescriptions to knock down a yeast infection if that is what is causing the problem. There is a lot of info on here about yeast issues.
I'd definately look further into detoxification issues as well. That seems to make many of us terribly ill while on abx. Like you, I have had a rough time on the abx. Found out that we were killing a lot of bugs but my body wasn't doing a good job of detoxification. My LLMD put me on some detox remedies for intracellular toxins (Pekana) and also some to bind endotoxins (cholestryamine). He also wanted me on something to mop up metals (chlorella) because when the bugs die, they release metals.
There is a ton of info on this site regarding theses issues. I know it sucks being so sick. I'm in the same boat as are many others here. Hang in there. You will get through.
Oh, one other note, be sure to watch for depression and anxiety. If it gets to be too much either find something natural or ask for something to help you deal with it.
You need to support yourself while on abx because they are not easy on your body and the killing of all the bugs puts a big burden on your body.
Wishing you the best, Terry
[ 31. March 2007, 09:21 PM: Message edited by: TerryK ]
Posted by lou (Member # 81) on :
Good suggestion, terry, on the probiotics. This is something that newbies typically don't take seriously until yeast gets really bad. They also forget about the low carb, no sugar diet needs.
Byron, if you have been sick more than a year, it is going to take longterm treatment, so try to find some patience. Another thing you might consider doing is switching to a screen name to post on a public forum. It is safer. Don't use your real name, in other words. I strongly recommend this!
I should add that young guys like yourself have a better than average chance of improvement with treatment.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lou: Good suggestion, terry, on the probiotics. This is something that newbies typically don't take seriously until yeast gets really bad. They also forget about the low carb, no sugar diet needs.
You could also be on your monthly herx cycle. That will occur every 3-5 weeks.
Definitely look into babesia. I'm sure doc will treat you for that soon.
Call him Monday!
Posted by polar blast (Member # 9142) on :
you may want to start on high dose doxy..the meds you are on dont target enough..most of us started on doxy..talk to your doc..it may be why you are back sliding..you may have ehrlichiosis...so talk to the doc.. eric
Posted by cantgiveupyet (Member # 8165) on :
Call your dr first thing monday, OK.
You sound just like I did when i started treatment. You feel bad before you start antibiotics, and you think ah i cant feel worse and then you take the antibiotics and then things get so much worse.
I started with 200mg of doxy and by the 2nd week I was in real bad shape. But, things did get better, I took a few breaks here and there, corrected my diet, took probiotics too. and drank a lot of water.
It wasnt easy figuring it all out, i was dealing with mega yeast as well due to a high sugar carb diet prior to sickness in August 2005. The diet really helped me as did a few months of Diflucan (antifungal) and Theralac probiotics.
If you arent already keep a journel of your symptoms, so you can track your progress, this helped me a lot. Yesterday, i looked back at mine a year ago...and it really told a lot.
Detox is also very important, many of us cannot detox and have a real tough time getting rid of the toxins. Its part of our genetic makeup. That was also a huge issue for me which i just found out thru testing.
How is your diet? If your eating sugar, my guess is that is just adding to your misery.
Hang in there.
Posted by Robin123 (Member # 9197) on :
Suggest you take a look at www.betterhealthguy.com. Scott has a lot of info on all kinds of tx, including detox. You could also send him an email at his site asking if he has ideas for you.
BTW, that was you on lymechat tonite, wasn't it?
Posted by ByronSBell 2007 (Member # 11496) on :
I dont eat sugar and my carb intake in minimal, My LLMD is treating yeast with daily probiotiics and nystatin. I have no real way of detoxing. I do epsom salts baths here and there but I don't notice any relief with them. I also get a glutathione IV once every 2 weeks. That doesn't make a difference either....
What about chorella? Milk thistle? CHolestyramine?
I have heard about these but dont know much on them...
Posted by lou (Member # 81) on :
It is not a good idea to give specific details about a doc's treatment on a public forum like this, especially when you are using your real name.
Tutu, could you explain privately? I tried to pm you but your box is full.
Posted by Lymetoo (Member # 743) on :
gottcha
Posted by CaliforniaLyme (Member # 7136) on :
Have you been tested for babs>? you sounds very babs-like in presentation!!!! The new poster SarahL is also from TN!!!
W E L C O M E !*)*)!*)!!
it sounds like you may belong here very much indeed- Best wishes, Sarah
Posted by ByronSBell 2007 (Member # 11496) on :
My LLMD said that testing for co infections was worthless due to falsy testing so he is going to go ahead and treat for all of them anyway. I did half a month of clindamycin/quinine and a month of Biaxin/Plaquinil.... no real improvement but I did herx but the herx was just like all my herxes from say ceftin, zithromax, doxy....
Posted by Lymetoo (Member # 743) on :
It may take MANY rounds of clindamycin/quinine to clear babs...many. So don't give up yet!
Posted by David95928 (Member # 3521) on :
I am a long-term chronic lymie who is doing pretty well. On my occasional bad days, I drink Detox Tea made by Yogi Tea Company. It helps alleviate my symptoms, especially malaise, vertigo, and mind fog. They also make a Peach Detox Tea that DOES NOT WORK. You should be able to get it at most health food stores. I hope you get to feeling better soon.
Posted by TerryK (Member # 8552) on :
Per your questions about Cholestyramine - milk thistle and chlorella - it's imperative that you discuss use of any of these supplements with your LLMD, especially since he is already doing treatments for toxins.
My understanding is that Cholestyramine/questran (a prescription medication) is used to bind and eliminate fat-soluble toxins in the gut. It is thought that for some, these toxins are reabsorbed and continue to circulate in the body because some people have difficulty removing these toxins on their own. Lyme patients are given actos to mitigate the nasty side effects that one can have while using it.
Some other toxin binding agents that are not prescription that may act similarly are chitosan and apple pectin. All of these agents, including Cholestyramine may remove metals as well.
More about the toxins created by lyme from this site: http://www.personalconsult.com/articles/lymeendotoxins.html Lyme Endotoxins & Biotoxins Some physician's feel that Lyme is like a donut covered in powder, but the powder is a biotoxin or "endotoxin." And some patients are very poor at removing these toxins. These biotoxins mess up hormones, mess up your weight, weaken you ability to fight infections and cancer, lower your natural pain killing endorphins, undermine sleep and thinking. These are just a few examples. The bottom line is that biotoxins can leave you very ill and in an unknown percentage can kill.
Sincere physicians treat many patients with antibiotics, and yet this releases biotoxins and endotoxins from the Lyme, and these are biologically active chemicals that effect genes and commonly increase weight, increase mood trouble, and increase inflammation and forty other problems.
My opinion is that it is a proven fact that Lyme has endotoxins in the small abstracts below. But what is an endotoxin?
Simply, they are substances on the outside of the lyme bug, in its outer shell, which is typically released when the lyme bug is disrupted or destroyed. Endotoxins are very active molecules that cause severe allergic reactions, fever and influence your immune system significantly. Some endotoxins are so strong they cause you to lose your blood pressure and die from the loss of blood to vital organs, or from severe diarrhea if the endotoxin is in the intestines. Obviously, Lyme's endotoxins do not act this particular way.
Endotoxins are a made of two parts: a fat or lipid bound to a polysaccharide chain in the lyme bug's outer shell. Endotoxins are like other biotoxins in that their goal is to help the bug survive. Some endotoxins are released in the body to make it safe for new lyme bugs, or when attacked by your immune system attack cells. The full actions and types of Lyme's biotoxins and endotoxins is unknown.
Biotoxins exist in many types of creatures: tetanus, botulinum (botox), spiders, algae, ascaridin (gut parasites), staph, strept, babasia, lyme, special fish, clamydia, tuberculosis, fungus or molds and viruses. Biotoxins are proposed to be tiny molecules used to survive by effecting the host�s body in many ways that helps the infecting agent survive.
Labs that must be checked in all Lyme patients are:
Leptin (LabCorp test code 146712) Alpha MSH or Melanocyte Stimulating Hormone (LabCorp test code 010421) Biotoxin Processing Genes: HLA DRB, DBQ Disease Evaluation (LabCorp test code 012542) The last lab listed, or the HLA lab has been found to provide some specific genetic abilities to removal Lyme toxins. Our new Mold Warrior book has the table that shows which people have trouble removing Lyme biotoxins -- so they just float around the body forever messing up DNA and the body.
MSH is a massively critical hormone that will be a hot new treatment in future years and help with acne, obesity, addiction, sleep, fatigue, etc. If your MSH is low you clearly have massive toxins or inflammation that is at a dangerous level. You will need treatment with someone with is up on this 2006 medicine.
Leptin helps you see if the biotoxins have messed with the fat cells. It is a sign common in Lyme biotoxins and massive inflammation. (Reading it is complex.).
Studies on clearly positive Lyme patients show a simple biotoxin binder that NEVER leaves the intestines improves the patient's health and they do better in brain tests that measure biotoxin disease. Most initially get much sicker as the fat-loving biotoxin is pulled out into the blood stream and inflames the body, but over many weeks or months they clearly improve -- with no antibiotic. Most have had extensive lyme killing antibiotics already. Of course, the biotoxin binder needs to be used at high doses or it is a false trial -- like licking an aspirin and expecting arthritis relief.
Of course, their improvement assumes they are not living in a home with toxic mold all over the walls, or hidden behind a wall. This has actually happened when someone is not getting better. I ask about the possibility of indoor mold and they say, "Oh, we killed all that stuff under our floors last year with some bleach and changing a few boards." I just shake my head. They sincerely do not understand that some indoor mold chemicals are biowarfare agents -- we are not talking about the 100,000 to 200,000 safe forms outside. They were not getting better and we found toxic mold species at work or home.
According to Internist and author, Dr. James Howenstine, Lyme disease "requently exhibits neurologic abnormalities because the Lyme neurotoxins are drawn to the fatty tissue found in the brain and peripheral nerves. As a consequence sudden deafness, Bells palsy, Parkinson's Disease, Multiple Sclerosis, reflex sympathetic dystrophy, peripheral neuritis, and chronic pain may appear."
FOR THE REST OF THE ARTICLE AND THE ABSTRACTS - GO TO THE LINK SHOWN ABOVE.
Also, a study using cholestryamine:
Sick building syndrome (SBS) and exposure to water-damaged buildings: time series study, clinical trial and mechanisms.Shoemaker RC, House DE. Chronic Fatigue Center, 500 Market Street, Suite 103, Pocomoke City, MD 21851, USA. [email protected]
I've already posted info about chlorella in the thread where you ask about it.
Milk thistle is used as a liver protectant and can be helpful.
Again, please discuss with your LLMD before going ahead with any of these supplements. You will find a lot of knowledgable people and great information here but keep in mind that I'm not a doctor and most of us here are not doctors. Terry
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