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Could it be Lyme?
Over the years I have had positive Lyme screen tests (B. burgdorferi Ab, IgG, IgM) but then the ensuing Western Blot tests to back it up were both negative. The lab indicated that this could mean I have autoimmune disease causing a false-positive Lyme, but my CRP and sed rates are always normal so I was told I could not have autoimmune disease. After quite a while I was referred to an "infectious disease specialist" and that @$#% just sat on his keister and told me (without examining me or doing any tests) that I could not have Lyme disease because it is "not a chronic disease." Meanwhile, I am deteriorating with neurologic symptoms that are like a textbook case of ALS - but the doctors just blow me off. I have muscle wasting, but no joint paint. No pain at all except when my neck muscles get so tired of holding my head up. When I use a neck brace, the pain goes away. I have extreme weakness, fatigue, muscle cramping, weakness in cheeks, mouth, arms, legs, neck. Walk with cane. Falling. Nighttime breathing issues. Choking on saliva sometimes. Etc.
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Best Answer
Quite a complex treatment! Would be glad to see links to the documentation you have on these approaches.
Which part of the treatment is active against biofilms in order to reach the bacteria shielded there? That seems to be one of the particularly difficult problems to overcome in Lyme.
Were you tested/treated for any co-infections?
Which part of the treatment is active against biofilms in order to reach the bacteria shielded there? That seems to be one of the particularly difficult problems to overcome in Lyme.
Were you tested/treated for any co-infections?
I found this treatment protocol for Lyme (below): (I lost the source but will find again and post here). Also, the herx reaction is apparently due to ammonia which is a waste product produced by the bacteria (and parasites as well). L-ornithine is said to 'mop up'/help the body eliminate the ammonia which is very toxic, especially to the brain.
OK, here is the cure. It works and I've cured myself twice this way...You need 4 antibiotics (15 of each kind) to begin: Doxycycline, Minocycline, Tindamax and Bactrim. You take Doxy when you have joint pain but only take one a day. You take Minocycline + Tindamax together for nervous system symptoms but only take one dose. You take one Bactrim for digestive problems but only take one.
You take one of the 3 abx doses a day depending on what kind of symptoms you wake up with.
Doxy, Mino and Bactrim kill Borrelia by not allowing it to complete it's cell division. An hour and a half after taking Doxy the Borrelia will hide from it according to the good research Dr. Eva Sapi has done. Tindamax will kill the Borrelia blebs that contain m-RNA by blocking it's transcription into DNA.
Minocycline and Tindamax can cross the blood barrier to kill it in the brain, spine, and nervous system. Tindamax stops the Borellia from creating their round body forms when exposed to the Doxy in the Mino.
Bactrim will kill it in the digestive system.
When you have taken all the antibiotics you will probably have some Borrelia spirochetes left in the capillaries of the brain. To kill these you will need to drink Wild Cherry Bark extract drops in your favorite drink once a day for a month. Pinella will also work the same way. Or you can drink Celestial Seasonings Red Zinger tea for a month after completing the 45 day antibiotic treatment.
No matter how long you have had Lyme this will work!
I cured myself twice this way after being re-bitten. The second time took 8 weeks to a FULL cure. Good luck!
p.s. I have a degree in Cytology from Indiana University so if anyone wants the scientific papers to back up this cure I will be happy to point the way.
OK, here is the cure. It works and I've cured myself twice this way...You need 4 antibiotics (15 of each kind) to begin: Doxycycline, Minocycline, Tindamax and Bactrim. You take Doxy when you have joint pain but only take one a day. You take Minocycline + Tindamax together for nervous system symptoms but only take one dose. You take one Bactrim for digestive problems but only take one.
You take one of the 3 abx doses a day depending on what kind of symptoms you wake up with.
Doxy, Mino and Bactrim kill Borrelia by not allowing it to complete it's cell division. An hour and a half after taking Doxy the Borrelia will hide from it according to the good research Dr. Eva Sapi has done. Tindamax will kill the Borrelia blebs that contain m-RNA by blocking it's transcription into DNA.
Minocycline and Tindamax can cross the blood barrier to kill it in the brain, spine, and nervous system. Tindamax stops the Borellia from creating their round body forms when exposed to the Doxy in the Mino.
Bactrim will kill it in the digestive system.
When you have taken all the antibiotics you will probably have some Borrelia spirochetes left in the capillaries of the brain. To kill these you will need to drink Wild Cherry Bark extract drops in your favorite drink once a day for a month. Pinella will also work the same way. Or you can drink Celestial Seasonings Red Zinger tea for a month after completing the 45 day antibiotic treatment.
No matter how long you have had Lyme this will work!
I cured myself twice this way after being re-bitten. The second time took 8 weeks to a FULL cure. Good luck!
p.s. I have a degree in Cytology from Indiana University so if anyone wants the scientific papers to back up this cure I will be happy to point the way.
I don't know anything about gabapentin, but I think it's pretty well established that a bacterial infection (including Lyme) is not treated with immune-suppressing drugs like prednisone, because the immune system needs to be active to kill the bacteria.
I can't at a quick glance see what comment you are referring to, but my understanding is the same as yours.
There is some confusion in the medical world, because nonLLMDs will treat Lyme with a few weeks antibiotics, and any remaining symptoms are deemed 'post-Lyme', meaning that the Lyme bacteria are all dead and gone, so any continuing symptoms are your immune system over-reacting to bacteria that are no longer there. (Like after you've been mugged, you'll jump when you hear the smallest noise while walking down the street.)
LLMDs take a contrary view, which seems more reasonable to me: if you still have symptoms, you are still infected, and it means the treatment was not complete.
I can't at a quick glance see what comment you are referring to, but my understanding is the same as yours.
There is some confusion in the medical world, because nonLLMDs will treat Lyme with a few weeks antibiotics, and any remaining symptoms are deemed 'post-Lyme', meaning that the Lyme bacteria are all dead and gone, so any continuing symptoms are your immune system over-reacting to bacteria that are no longer there. (Like after you've been mugged, you'll jump when you hear the smallest noise while walking down the street.)
LLMDs take a contrary view, which seems more reasonable to me: if you still have symptoms, you are still infected, and it means the treatment was not complete.
Hi, now I am really confused. I take the gabapentin but for my neuro Lyme, I was told by a Dr who also has lyme never to take plaquinol or prednisone because it can help to destroy an already compromised immune system. Since he is a Doctor and has neuro lyme, I listened to him but it is all so confusing.
I too would get my kid to an LLMD.
I not sure if we have anyone here who is from your area, but by doing some simple google-type searches online, you will find website with referral functions. Here are two searches I just did that turned up some interesting possibilities:
llmd spokane
washington state lyme literate doctor
lyme disease association doctor referral
Also try ILADS [dot] org, the main voluntary group for Lyme docs. They may have a referral function too, or a list of member-docs that you could browse.
You might also search Idaho, of course, since I know Spokane and Seattle aren't near each other.
Some states don't allow docs to practice according to their consciences, but I don't know exactly which are which ... if you are coming up dry in one state, try another search, but I think Washington is okay for LLMDs from what I've just seen online.
Don't give up -- don't give up -- don't give up! Sending you all good wishes --
I not sure if we have anyone here who is from your area, but by doing some simple google-type searches online, you will find website with referral functions. Here are two searches I just did that turned up some interesting possibilities:
llmd spokane
washington state lyme literate doctor
lyme disease association doctor referral
Also try ILADS [dot] org, the main voluntary group for Lyme docs. They may have a referral function too, or a list of member-docs that you could browse.
You might also search Idaho, of course, since I know Spokane and Seattle aren't near each other.
Some states don't allow docs to practice according to their consciences, but I don't know exactly which are which ... if you are coming up dry in one state, try another search, but I think Washington is okay for LLMDs from what I've just seen online.
Don't give up -- don't give up -- don't give up! Sending you all good wishes --
My 11 year old son has been sick for a year. After many tests and procedures I asked for referral to infectious disease Dr because ifelt his symptoms sounded similar to lymes symptoms. Screen test for lymes was positive but the western blot or whatever test didn't give high enough result for him to say my son has lymes. I'm so frustrated I want to scream. My son always ask me to fix his bokenness and he asked me once if he was slowly dying and I just cried. All I ever hear the Drs say is he just has such strange symptoms. I'm not going to get any help going through the hmo hoops. Can anyone tell me who is lymes knowledgable in spokane washington
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I'm so sorry your docs are doing what too many of mine did too: just blow it all off. What's good is: you aren't giving up finding out what's going on. I admire that spirit.
Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers. Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.
There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening. It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme. There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme. He recovered. If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.
About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services. Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you. Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities. Also, if you get an LLMD that just doesn't seem right somehow, then switch. Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
The first one, ILADS, is the main organization for LLMDs. Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.' Well worth reading if you're up to it.
The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)
Best wishes to you -- stay strong, and come back and visit with us, okay?
and PS about your tests being negative: the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves. Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme. Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system. Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine: history and exam, then tests, to come to a diagnosis. Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.