posted
I need help please. I am Igenex IGM positive for lyme, not IGG. I tested positive for Bartonella and Erlichia.
For the past six months I have been back and forth to my doctor (not llmd) who is convinced I have syphillis and not lyme even with positive Igenex.
I persuaded doctor to give me amoxicillan 500 mg. 4 times a day for a month to start. I started taking it last Tuedsay and this Monday (seven days later) I started to feel itching and my face flushed. No rash. Doc immediately took me off saying allergic reaction.
Since being off the meds from Monday, I have felt increasingly worse. Today Friday my face is very itching and tight feeling. My eyes itch. My muscles are heavy and ache. And I feel so tired. I feel so much worse than when I started meds.
What happened? My skin feels like its on fire and I am so tired and achey.
Last night for a split second my eyes were closed and I saw like a pile of wormy looking things moving like in my eyeballs but with my eyes closed. I feel like I am seeing things now.
My doctor wants to hospitalize me and desensitize me to penicillin and give me that for 14 days to cure syphillis. I refused because I believe it is lyme not syphillis and I don't think my body could withstand that kind of massive antibiotic right now.
I contacted Dr. H of NYC for a new patient appointment and he is not taking any new patients right now. I am on waiting list and there are about 170 people ahead of me.
I feel sick and am so scared these doctors here through ignorance will make things worse for me.
What can I take to feel better until I get treatment?
Is there anything mild I take naturally that works on the lyme bacteria until I can get to an LLMD.
Does this sound like lyme to you?
Somebody please help me. Please.
Posts: 138 | From US Virgin Islands | Registered: May 2012
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sammy
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posted
You could follow Buhner's recommendations until you get in to see an LLMD.
Stephen Buhner is well respected, many people take his herbs alone or even along with their antibiotic protocols. He's has written books and has a website full of information on treating Lyme. You can access the website for free but you should also get the latest book to better understand his protocols.
He even tells you where he recommends that you get the herbs and how much to take. He makes it easy to understand.
You might try to get on the wait list for a couple well respected LLMD's since you are traveling a long distance already. You could see anyone really since you are flying and not driving. You may find another doctor that has a shorter wait list that can also treat you well.
Good luck Posts: 5237 | From here | Registered: Nov 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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annxyzz
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posted
Can you take doxycycline ?You can order vet doxy like birdbiotic formula. Thomas Labs sellls great ABX for animals that are pharmacy grade .
The other options : order or buy natures way andrographis , herb pharm artemesia annua , and nutribiotic grapefruit seed extract . These are potent and will really help. Also , samento and banderol are supposed to kill BB in test tube. However I would get artemesia annua and GSE ASAP.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Don't allow the "syphilis" diagnosis doctor to get anywhere with your treatment plans!
I second Sammi's suggestion to try some Buhner herbs. You can get Stephen Buhner's book, "Healing Lyme," which also discusses how to treat the co-infections too. There's also a yahoo site, lymeaidbuhner, for discussion.
Posts: 13117 | From San Francisco | Registered: May 2006
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WPinVA
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posted
Can you get in with another LLMD while you wait for Dr. H.? Your experience is not unusual. It is usually not possible to get in right away with one of the tops Lyme docs. The way to do it is to get in with a "lesser" LLMD (still must be an LLMD, as you have already learned because the syphilis theory is ridiculous) and then switch when you can get in to a better one. If you can't get into an LLMD right now, another idea would be to find an "integrative medicine" doctor who is Lyme-friendly.
When I got sick, I first saw an integrative doctor who continued my dosage of doxy past the initial three weeks that I had been given by an IDSA-following doc. Then I was able to get in to see a nurse practitioner at a respected Lyme practice, who upped my doxy dose, diagnosed and treated co-infections, etc. Finally, six months later, I got in to see the LLMD himself.
I probably would have been really stressed by all of this if I hadn't been given the "work your way up" advice from an experienced Lyme patient. With the dearth of LLMDS, especially very good ones, this is the unfortunate reality.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Catgirl
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posted
I called 2 ILADS (Internatation Lyme and Associated Disease Society) docs and asked to be put on their cancellation lists. I was able to be seen within 3 days.
Although I did not end up with the doc I initially saw, I was grateful he diagnosed and treated me. Eventually, I found someone more in tuned to what I was looking for and was able to space out my appointments.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Did you ask to see Dr. H's PA or his NP? You can get in with one of them a lot faster than with Dr. H himself.
Posts: 200 | From Boston | Registered: Sep 2010
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posted
Hello everyone. Thank you so much for your input. It helps to know I have the support of the fellow patients. I will keep you posted with who I get an appointment.
Posts: 138 | From US Virgin Islands | Registered: May 2012
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glm1111
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Member # 16556
posted
I would immediately start taking antiparasitic herbs and salt/c!! Lyme disease can have a MAJOR parasitic/worm connection to it and is often overlooked even by the best LLMDs.
You can start with something like Parastroy, Humaworm, Hanna Kroeger Wormwood Combo etc. One mos is NOT enough and you have to tx until symptom free. Google parasite symptoms.
Check out the lymestrategies site for proper dosing of salt/c. Parasites hate salt (sea salt) and it puts them into osmotic shock and kills them. The salt also kills the spirochete and cyst form. Good Luck, Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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AuntyLynn
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Member # 35938
posted
Prayerworks - - There's an EXCELLENT LLMD in DC. I will private message the name to you. (Go to "My Profile" at top of page to retrieve your private messages.)
There are also some others in the NYC area who are very good - and one in NJ who is said to (possibly) be even better than Dr. H!
Meanwhile? Hell, if it WERE NOT for your apparent ALLERGIC REACTION to the Amoxy, I'd TAKE the Penicillan! Given that syphilis and borrelia are 1st cousins, it would likely be the BEST thing you could do at the moment! Just arrange to see a real LLMD ASAP, and use this one for what you can get!
If you had an LLMD now, there's a GOOD chance he/she would put you on IV Rocephin ANYWAY - which is a "pumped up" FORM of Penicillan!
And MASSIVE abx - the sooner the better - is what ILADs specialists are pursuing right now!
I expect I'm going to take some flak for saying this - but fact is, hammering with ABX early in the course of the disease is the BEST WAY to prevent "Chronic Lyme."
And the reason why so many are chronically ill, is because those who WERE diagnosed early in the game, were NOT given an EFFECTIVE dose of ABX!
I don't know how long you've been sick - but it surely sounds like you are "sick enough."
Please watch the movie "Under Our Skin" (if you haven't already) ... and you will get much more information about treating Lyme, and the result of insufficiently treated Lyme.
Also: You might want to show your doctor this new study, that recommends that Tinadazole, NOT Doxycycline, should be the FIRST line of attack against Borellia burgdorferi! (Some LLMDs are already making the switch.)
May 2011 study (Tinidazole more effective than Doxycycline)
Don't forget to check your Private messages. Please know that I wish you the best!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Lymedin2010
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Member # 34322
posted
I second Gaels suggestions.
If I had to go back I would start all those immediately. From the experience of others they also help with coinfections, sometimes better than antibiotics. I had heard of many, especially Gael, mention parasites, but I was too concerned mixing all the aforementioned. I've gotten to the point where I had no choice but to try or risk being sick forever and getting worst.
I am on Doxy, Biaxin, Rulide, and many of the ones she listed. I back slide without Doxy and Biaxin and it is easy for me to tell. While taking all of those along with ABX I don't backslide, only herx.
I just backslid while also trying to add Rifampin, which reduces the effectiveness of Doxy and Biaxin. After a week I stopped rifampin and now back on track.
Gael is great and has personal experiences. She tries her hardest to help and warn others, something that I am familiar with after going through with this evil. Unfortunately not everyone listens, but it is hard with so much information and factors involved.
Posts: 2087 | From NY | Registered: Oct 2011
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Catgirl
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posted
I agree with Gael too. The journey I went on with antibiotics was hell and I am still paying for it even though I'm off abx.
Back when I was diagnosed with lyme, I never would have thought to consider something outside the norm of conventional medicine (antibiotics).
It was hard enough for me to even grasp lyme and the controversy over it. So, naturally, going outside the norm (western medicine) and trying something else was way off of my radar. If I knew then what I know now...
I guess I always thought alternative medicine was for people who didn't know any better. Boy, was I wrong.
I'd do salt/C protocol at least and until my apt., and layer in some anti parasitics.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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AuntyLynn
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posted
Not saying antiparasitics and salt-C aren't real useful! You folks have already convinced me of that.
But prayerworks has a POSITIVE for Lyme and for 2 coinfections - Bart & Ehrlicia!
And as I understand it, each of you who have had success with antiparasitics, had courses of abx FIRST. They simply did not address your problems in their entirety!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Catgirl
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posted
I completely understand AuntyLynn. I hear what you're saying about taking abx first. I'm not trying to offend anyone by suggesting what I would do (nothing personal). I'm just saying what I would do if I had it to do over again.
I went undiagnosed with lyme and co infections for many years, possibly even decades. However, when I ended up in the hospital after being bitten again (one of many times), they just sent me home with some prilosec and prednesone (I only handled that for a few days).
Then my ob looked at my blood tests from the hospital. She suggested I read a book called "Adrenal Fatigue." The book says to add more salt and vitamin C. I did this and felt better slowly. Then I went vegan and felt even better.
So of course, I can't help but feel that if I had it to do over again, I would have done the salt/C protocol first (before I ever did abx).
The salt/c protocol is at much higher concentration levels than I was taking. But what I was taking helped.
Prayerworks is just waiting for an apt. Salt C protocol is the way I would go. Plus, it's readily available.
Prayerworks, I would see how you feel on it. Then you can layer in some anti parasitic herbs. Parasites are a HUGE factor with lyme. It's taken me a year to figure this out (I'm a bit slow at times-ha ha).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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glm1111
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posted
I don't disagree with heavy abx when first dx, especially if it early on after being infected. Maybe I am misunderstanding, but Prayerworks doesn't have any abx from what I understand. The salt/c and herbs were suggested in place of.
I would however (wish I knew then what I know now) go after parasites in the meantime. The salt/c is also supposed to kill the borrelia as well. Check with lymestrategies.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Everyone that responded thank you. I didn't respond sooner because it's been a rough few days with much anxiety. But again, thank you. I have other questions, but I will ask them under new post.
Posts: 138 | From US Virgin Islands | Registered: May 2012
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nonna05
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posted
I know he's ,DR.H, good, But he's not the only one out there that can help get you started..
did he actually test for the other?
how sick are you at this point?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." -- Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AuntyLynn
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posted
Thanks so much for that Tutu!
This info is a "keeper!"
Posts: 1432 | From New Jersey | Registered: Jan 2012
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poppy
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posted
Have you ever had any reaction to a med in the penicillin group in the past? I ask that because a herxheimer reaction can be mistaken for an allergic reaction. And a non-lyme doc will not usually know that.
Might be a good thing to go to an allergist and get tested. Would be useful info for your lyme doctor, when you get one.
Posts: 2888 | From USA | Registered: Mar 2004
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annxyzz
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posted
I am being blown away by reading from other health sites . There are many of them :lymebusters, curezone, mdjunction, and on and on . There are MANY people taking ABX and combos ...This is not news is it ? The surprise I am finding is that there are a surprising number of people posting that their "LYME " symptoms went away WITH parasite meds . NOT ABX .
It is mind boggling to think that there are a lot of sick people dosing ABX over and over and not improving , yet a parasite med is added and the lyme hell appears to improve.
I am not trying to start a contraversy or advocate anything particular . I am simply sharing that after reading at many "lyme " sites, there are people who get better when treating parasites .
I have read posts at other sites that sound similar to nefferdun's experience . The members share that they try multi varieties of antimalarials , ABX , ABX combos, and do not feel better . Then they try a parasite med and feel worse initially , then begin to feel noticeably better for the first time .
It literally boggles the mind . For those interested in more info : google these combos : ivermectin lyme disease parasites lyme disease ivermectin improvement llmd parasite meds lyme disease fenbenzadole report results here
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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CD57
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Member # 11749
posted
Annyzz -- good point. I have never done reading at those sites (don't like Curezone, formatting too difficult).....here it does seem like ABX go on and on without a lot of results.
what I am unable to figure out is, can parasite treatment render treatment for bartonella and Lyme and others, ineffective?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
whoops, meant to say, can not treating parasites render ABX for the other bugs useless?
Or is it saying that parasites are the cause of all the symptoms of Lyme and co?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
One more thing: my doc has been finding that in some instances, previously non responsive patients have been improving with Ivermectin.
Posts: 3528 | From US | Registered: Apr 2007
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Marnie
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posted
Penicillin desensitization is NOT a bad idea.
I also remember reading ***a long time ago*** about a woman (doc) who was on a form of Pen. (shots) for MANY months and cured lyme.
I think it was bicillin.
I would have to dig for that file in another disk, but will try to find it if you need it.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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CD57
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Member # 11749
posted
Lyme by itself seems pretty easy to knock down. The literature and testimonials are out there. Makes perfect sense that someone would improve on Bicillin shots alone.
It's when Lyme is mixed with all this other crap that we become chronic.
Posts: 3528 | From US | Registered: Apr 2007
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annxyzz
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posted
CD57 :
I have been surfing lyme health sites . I am floored to read some reports of people who have taken beaucoups of antimalarials and ABX and not have significant improvement til their doc throws in a parasite med . Then Voila , the "LYME " "BABESIA " symptoms go away . There is a powerful lesson in that . But the result leaves questions to explore : Is the parasite med hitting babs or lyme in a way that other drugs can not target ?
Is the infection causing "LYME or BABS " and air hunger , fatigue , etc.. essentially a parasite infection and not lyme ? ( Call me crazy , but this is the conclusion I lean toward . Simlpy the guess of a nobody . )
I read testimonies of multiple people who got parasite tests that showed they were indeed infected with lungworm , hookwarm, strongyloides ( several through metametrix labs ) which are NOT SUPPOSED TO EXIST IN THE USA!
I read a couple of other stories very similar to nefferdun's - they just took parasite meds and started feeling better and were in shock .
I also read several testimonies of people starting to feel BETTER , then removed the parasite drug and started feeling worse again.
My theory ( not even a very smart individual ) is that GAEL is right and many of us do have unknown parasites and loads of antimalarials or ABX will never work .
This puts us in a postion of being forced to experiment with antiparasiticals ( or sit around waiting for a miracle from big pharma ) which many are doing after raeding Klapow's study of CFS lungworm and Eva Sai's report on filaria with lyme .
At least we are getting some positive reports with some people who are improving unexpectedly after getting nowhere with years of other drugs.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
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posted
Aunty Lynn , I did 3 years of ABX and got no improvement . You are right " they did not address the infection in its entirety " . As a matter of fact , every person I have communicated with with lyme has quit them and has NOT improved muchat all . I am not being negative just stating that I have yet to meet a person cured by them ( unless infection was caught early ) . Maybe they work better in your world . And I know lots of people who have tried combos thinking they will hit a magic "note " . I personally hope they work for everyone who tries them .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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