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Posted 10/30/2012 10:30 AM (GMT 0)
I know from my experience that stress makes my symptoms worse. I try to do all I can to live a stress free life. But, sometimes life happens! My father in law passed away in March of this year. And today, we will burry my Granny. Weight loss gets worse, and the pains and anxiety go through the roof. I am two months into antibiotic treatment. Added magensium, detox baths, vit c, probiotics and relaxation techniques.

I went to pick up my antibiotics yesterday and I told the pharmacist Id be better off if I had Cancer. I receive the antibiotics for free at a local food chain store. He looked at my script (60 day supply) and said, "you know you need to be on these for a year!" I told him I knew from the research I have done but the Dr who prescribed them cancelled my follow up appt. After so many Drs and no diagnoses nor treatment it is hard not to be stressed out~ He said to call back to Dr office and tell them to continue with antibiotics. I wish it were that simple. I wish Drs cared and understood this disease.

I do not understand why there has to be so much controversy over Lyme Disease. Even AIDS which has a social stigma to it gets treated. It is not as if we have done something wrong....we were bit by a tick, flea, mosiquito....why the reluctancy to assisit someone in getting well? I see so many posts from others who like me, feel like they are dying at times. I have had my share of those days. Many days I lose sight of getting proper treatment. Who in this condiditon has the time, energy to do the research , continue to go to Dr to Dr or the will?

I wish there were more success stories. Thank you for those who share what is working. Believe me..I try it all~

Posted 10/30/2012 11:34 AM (GMT 0)
Confused by Doctors,

Do you have a LLMD? Have you been tested for Lyme and evaluated clinically for Lyme and co-infections?

The controversy over Lyme has to do with one group of doctors working with insurance companies to prove that Lyme symptoms are NOT due to an active infection and the other group working hard to prove that an active infection IS the cause to substantiate that patients with lingering symptoms need further treatment.

If the IDSA admitted to long-term antibiotic use being beneficial for Lyme, insurance companies would have to pay a TON of money out for expensive open-ended prescriptions including IV's long term to thousands of people. Not to mention all of the legal ramifications that could occur as a result of having withheld treatment from all these patients for years on end.

I am nearly constantly stressed also. It definitely makes things worse. I have had seizures that were in my opinion provoked by stress. I've also lost a lot of weight but that is likely due to a combo of stress and babesia.

I know that it's difficult to eliminate stress. I get pretty annoyed when people tell me to just calm down or try to "forget" about certain things. They don't realize that it's nearly impossible to forget about severe constant symptoms, how I'm going to pay for treatment and food etc.

I think that you should focus all your efforts on trying to find an affordable LLMD to go to if you have not already. The ones on the LLMD lists tend to be the most well-known in the country. Your state's Lyme group may know of other lesser known LLMD's in the area.

I find that with careful and extensive research you might be able to come up with some plans of your own and find a doctor that can implement them for you. Ideally, we'd all like to have the top experts working with us, but financially that's not always an option.

Alternative medicine practitioners tend to be more open to diagnosing and treating Lyme long-term. What I do is call a practice, mention that I believe I may have Lyme disease, and ask them what lab they use for testing. If they say Igenex, I know I might have a chance at convincing someone at that office to implement long-term treatment. I found that out of about 4 integrative health centers within 200 miles, 3 of them were treating chronic Lyme and testing with Igenex. So that is worth a try.

Another option is herbal protocols like Cowden or Buhner. These work really well for lots of people. It's still best to have a doctor or ND to see though because I would not feel comfortable taking high doses of herbs without frequent CBC's and LFT's.
Posted 10/30/2012 12:47 PM (GMT 0)
Lost count of the number of Drs. Recently a local dr test Lyme Disease, Quant Ab, IgM, results, 2.34...positive.  For over 2 yrs I didnt know what was happening, just a lot of symptoms that dr wrote me off as complicated. Well over 35 symptoms. Gall bladder removed in Nov 2011, over 40 lb weight loss and still lots of gastro issues, muscle deteriation and many more. I was sent to an Infectious Disease specialist and he confirmed late stage Lyme and prescribed 60 days of antiboitic treatment, Doxy 100 mg 2 x daily. He cancelled my follow up appt when additional tests came back neg. I can only assume he doesnt want to get involved w Lyme. He has referred me to Emory in Dec 2012 and I found a LLMD in Tn that I am scheduled to see in Jan 2013. Not many options in Ga. I have requested and checked w all Lyme groups and chat forums. Money is depelcted and I am currently unemployed...to ill to go to work even if I could find a job. Praises, my husband has a good job w good ins, but finding that many want cash! I would love to think I serve a purpose yet so many are already fighting the good fight to prevent others from endless suffering. It is more than I can bear some days. Defenitely taking it one day at a time for the most part. Even, the local Dr I saw previously had given up on me which has been the case even before receiving a diagnoses. Thank you for all the info and trying to help me understand~ I am very grateful to have this chat to reach and hear from others. It helps with the isolation and even my family has a hard time knowing what to say and especially to know what to advise as my next steps.

 

Posted 10/30/2012 1:00 PM (GMT 0)
Unfortunately, mainstream doctors are usually not willing or able to treat the complexities of Lyme disease. They literally learn what they know about Lyme from a brief outdated paragraph in a textbook. Most haven't even heard of common co-infections. They have virtually no training or knowledge of chronic Lyme and can only treat the easiest new acute cases.

I would definitely keep the LLMD appointment and stay away from infectious disease doctors. They are known, along with rheumatologists, to completely dismiss Lyme. I am surprised that you even got 60 days of abx. Most give 2-4 weeks of low dose doxy. I was told I had an eating disorder, stress or a psychological problem with ALL the objective markers of Lyme and a CDC positive test!

In the meantime, if you can try to find a naturopathic doctor or integrative clinic to at least get you started on some nutritional stuff, and perhaps pre-test you using Igenex or monitor your CBC's and LFT's locally that would be a good idea. You could also try some things on your own like eliminating gluten, sugar and dairy, supplements and herbs.

One of the first things I did while waiting for a LLMD was Japanese Knotweed and Andrographis along with lots of diet modification, magnesium, methylcobalamin, NAC and ALA. Before you know it, your appointment will be here!

Have you done a lot of research yet? There are a ton of great books to read about Lyme to get you started on coming up with some approaches for yourself. Most can be ordered into your library.

Healing Lyme
Cure Unknown
The Lyme Disease Solution
Insights into Lyme Disease Treatment
Adrenal Fatigue: The 21st Century Stress Syndrome
The Lyme Diet
Posted 10/30/2012 3:44 PM (GMT 0)
Hey Confused -
If you're heading to Emory, then you may be near Atlanta. I went to school there and saw a doctors group who treats for fatigue and other issues. I recently saw one of their offices in another state and that is where the doc started me on treatment for Lyme. It took 24 years and many other docs but this group is well aware of it and how to treat it and even works with other docs across the country to help out. They aren't LLMDs but for the most part they aren't because to be an LLMD you have to be mentored for a certain amount of time. When docs already have established practices and no mentors close by, it's often hard for them to be but I know some in this group who do have connections to LLMDs and are willing to work with you. If you are interested and Atlanta is a good location, let me know. I can pass on some info to you via email. Maybe this will help.
Posted 10/30/2012 4:29 PM (GMT 0)
By all means. My email is in the box. Send methe info. I am fairly close to Atlanta. Thank you for the info~
Posted 10/30/2012 11:21 PM (GMT 0)
Justascarf2.....would you mind sending me the Atlanta doc group info as well, please? My email is enabled. I live outside Athens & travel to Atlanta to an ENT/Mold doc. Thank you for sharing. Good health to you all.
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