treating yourself..no help from drs

Sorry to hear you're dealing with that... That really stinks! From what I read most antibiotics don't cross blood brain barrier like IV meds. I've been on multiple antibiotics for 16 months and have improved just a little bit. Azithromycin is good. I'm starting to add some herbal stuff. You might want to look up some herbal Lyme protocols like Buhner, cowden and there are others. I always hear of Samento and Banderol combo. I started taking Grapefruit extract and Knotweed (resveratrol). I hear adding Garlic and maybe olive leaf extract. Just do a search for Lyme protocols or herbs and lots of info should come up.

Sorry I'm not of more help... Oh, and detox. I just started doing that also.

Bactrim, that I believe you can order from a Canadian pharmacy, does cross the blood brain barrier. The usual dosage is 2 tabs double strength twice daily, but if you get a significant herx, cut back. Watch for allergic reactions.

Some of these pharmacies do not require a prescription from a physician. I would suggest googling "Canadian pharmacy" and read what comes up. Many advertise on the Internet. Be careful what you order. If you are going to be your own physician (and, yes, for many people that' s what it comes down to) read, read read about antibiotics, their side-effects, etc. You may also want to get what's called an "Epi-pen," which is what people keep on hand who have severe allergies. It's essentially a way to give yourself a shot of epinephrine (also called adrenaline) in the event you have an allergic reaction to a medication --- in this case, an antibiotic. We are in a very sad state of affairs due to what I'd called criminal actions by the core group of docs at IDSA who have perpetrated false information about these diseases and tests. Not everyone lives near an LLMD. Nor can many afford the travel costs. So these are some alternatives. I've also heard it's possible to order antibiotics from other foreign pharmacies - such as australia. And, of course, there is always Mexico! So, be very careful, but these are some options. It is criminal what people like Allen Steere, MD and Gary Wormser, MD have done to the field of tick borne diseases. But they are working for huge pharmaceutical companies, and their work is protected by confidentiality agreements. No one, not even their own department chairman, know what these men are doing in these employment agreements.

Hi verg,

I'm sorry to hear about the llmds. I have to disagree with what many folks have said on here. We have a lot of members that through some guidance but mainly their own research have healed on their own. It is always best to be under the supervision of a lyme doctor but perhaps you can still go to your pcp just to get things like bloodwork checked out. Some alternative protocols for you to check out that you can do on your own are buhners, cowden, jernigans, zhangs, just to name a few. Some are herbal, some are homeopathy.

You can start with something which is certainly better then nothing BUT keep in mind that doing something like this takes a fair amount of research and healing from lyme as many of us know takes a lot of work but it is 100% possible and most do heal completely from lyme.

Have you tried looking up local herbalist in your area? That might be a good start and an alternative to going to an llmd. When we think about the origin of medicine, all of it is in nature - penicillin is from a mold etc. etc. so it is really not that far out there that this medicine can work.

The issue of patients learning to treat themselves for TBD -- yes, a very controversial and questionable practice -- brings back memories of my student years, when I read a book by U of Wisconsin historian James C. Mohr, "Abortion in America: the origins and evolution of national policy, 1800–1900." Oxford: Oxford University Press (1978). ISBN 0-19-502249-1. OCLC 3016879.

Prof. Mohr describes how male allopathic physicians (MDs) were incensed by the admission of women students to alternative medical schools. Upon graduation, the existence of female physicians caused female patients to abandon their male MDs in search of female practitioners who knew how to "bring on the menses," induce abortion, and would instruct on the use of birth control.

Although there was no moral outrage to speak of concerning pregnancy termination in 19th century America, male MDs began to falsely exaggerate even more the medical dangers of abortion (already dangerous, with 1 out of 6 women dying during or after pregnancy termination), and intensely lobbied legislators to make the provision of abortion and contraception services illegal (the sole motivation according to Professor Mohr to put their female physician competitors out of business). The legislation was supported by allopathic organizations of its time such as the American Medical Association. Ultimately, anti-reproductive health care laws in the 50 U.S. States went unchallenged until 1965 when the the U.S. Supreme Court, in Griswold v Connecticut declared law prohibiting the use of contraception unconstitutional as a violation of the marital right of privacy. Roe v Wade followed in 1973.

From 1969-1973, health activists in Chicago formed a collective called "Jane," providing approximately 11,000 abortions to principally poor women. During those years, only rare MDs performed pregnancy termination due to the criminalization of the procedure. MDs risked serving prison time, as well as suffering enormous financial, professional and personal losses.

Members of the Jane Collective ultimately learned to perform the procedure themselves and provide follow-up care for their clients. See, "The Story of Jane: The Legendary Feminist Abortion Service," by Laura Kaplan, University of Chicago Press, 1995. More information can be found in
Wikipedia, "Jane Collective."

Until today, I had not thought about this bit of history. But it raises interesting questions. Would there be any utility in forming a collective of individuals who would draft a Manual designed to teach patients how to take care of themselves for TBD, particularly focused at those who are too poor, or geographically too isolated to receive continuing care for this complex of diseases that may stretch over years of time.

Certainly there are parallels here as to how U.S. State and Federal laws created harsh penalties for physicians who did not comply with laws curbing women's acceess to reproductive health care, ruining the professional and personal lives of the predominately female MDs who transgressed.

Similar actions presently exist against "LLMDs," but for different motivations, in an attempt by pharmaceutical company "captured" scientists to ruin reputations and the livelihoods of dissenting LLMDs. This will likely only worsen once trials get underway for the questionable Baxter LD vaccine with regards to Baxter's need to present an unbreachable united front in support of the false LD case definition, and to disparage dissenters --- disparagement of the reputations of both LLMDs and "Lyme activists." Profits created by the Baxter "supervaccine" (designed to be marketed over 3 continents - North America, Europe and Asia) will unleash expensive, powerful public relations campaigns to increase the anticipated billions of dollars of anticipated vaccine profit similar to what occurred with GlaxoSmithKline's product, LYMErix. If IDSA-affiliated physicians and their front PR organization, The American Lyme Disease Foundation, become more flush with cash, what implications are there for TBD patients? Will more LLMDs be forced to close their doors?

Keep in mind the IDSA guidelines were written to create a false case definition of Lyme disease, sharply narrowing the definition, to help marshall this amorphous disease through the complexity of FDA rules and regulations, and past human subject protection law embodied by "Institutional Review Boards." Without the IDSA guidelines, which now rob many patients of proper diagnosis and treatment, and the guidelines false LD case definition, it is unlikely any LD vaccine protocol would make it through the experimental protocols designed for the FDA to show safety and efficacy. The IDSA guidelines serve the purpose of being the "launching pad" for present and future LD human subject vaccine trials. Industry "captured" scientists, such as Drs. Steere and Wormser who sit on the IDSA LD diagnosis and treatment guidelines, will unlikely ever permit IDSA guidelines to be changed unless the change also serves their pharmaceutical client. The work of Drs. Steere and Wormser is protected and nontransparent through the use of corporate"Confidentiality Agreements." No one, not even the Department Chairman under whom these scientists work (both scientists known to be presently employed by Baxter) can know the nature of their work for these companies due to these "Confidentiality Agreements." It is as though the physicians' allegiance and obligations become twisted towards the pharmaceutical company, and not towards the physician's primary academic employer.

But what will become of Lyme disease patients and LLMDs in relation to possible Baxter LD clinical trials? There are curious parallels between the historical events culminating in the formation of the "Jane Collective" formed to provide outlawed reproductive health services, and what is presently faced by TBD patients in being denied medical services for impermissible motivations causing ruination of patients' health and finances - and that of their families.

The idea of writing a patient-centered Manual of instruction about how to obtain means of treatment through backdoor channels remains an interesting question, but not one to be taken lightly. To date, the Lyme disease community has already faced many of these challenges.

SusanLyme

Hi, all,

I was dx'ed with Chronic Fatigue Syndrome and did have many of the typical re-activated viral infections. Also they found mycoplasma pneumoniae (cell-wall deficient bacteria, steals energy, hides from the immune system) and various autoimmune conditions. Found out later these are common co-infex with Lyme.

So I was able to get antibiotics from the neurologist for mycoplasma, not for very long, but for long enough to tell I got way better.

The rheumatologist gave me doxycycline for "probable lupus." So this kept me going several years.

I went to out-of-state CFS doctors for antivirals and antifungals. Sometimes flagyl.

Eventually, a doctor who was a former Fatigue and Fibromyalgia doc was recommended to me. He realized I had Lyme. Two high-powered infectious disease docs had dismissed my band or two (at the time) Western Blot tests. I took the Igenex western blot and missed being CDC positive by one band IgG and one band IgM (I am IgM positive with the bands they use now).

This took 10 years. Several times, I had darkfield microscopy done and saw what I now know was cyst form, round bodies and spirochetes. Also, a parasite in my red blood cells sometimes infected every cell. I don't know what that is.

Ran out of money, but still go to the Fibro/Fatigue doc. Because I'm in Texas, most docs will not treat for Lyme unless you just got it and it's in your spinal fluid. After 16 years, I don't care about them. I don't have money to go out-of-state to an LLMD.

I take 500 mg azithromycin in the morning and 500 mg tinidazole (tindamax) in the evening. This keeps me from getting worse, though I sometimes have Lyme flares. My official reason is chronic sinusitis, mycoplasma and parasites. But this combo works well for some people with Lyme. I'm allergic to rocephin, penicillin and bactrim.

I also take the herbal tinctures by Nutramedix: Banderol, Samento, Cumanda, Parsley, Burbur and Noni. These are expensive, so I just take half a dropper once a day. I get worse if I go off.

The only advice I could give is what others have said: educate yourself. If you find something you have symptoms for that a specialist would treat, you might get some help for some of the conditions. Some meds help many different things. If possible, address hormones, like cortisol, DHEA, progesterone, thyroid and others. These can make life a lot more bearable and some of us have pituitary dysfunction and very low hormones.

It's very overwhelming to try to treat this on your own. I couldn't do it. But I think I know the desperation you are feeling. The whole situation is extremely stressful, which is bad for us. If you can find a local doctor who treats CFS/ME, they might be able to help a lot. Many people diagnosed with these also have Lyme, though they often don't know it.

Good luck, I'll be sending you good wishes.

Post Edited (Kolowesi) : 3/22/2014 11:35:09 AM (GMT-6)

Hi Nina,

No, I am not currently following the protocol. I am doing a few things from it, but I am currently under treatment by an LLND and seeing improvement. However, I keep thinking back to the Synergy protocol and plan on picking up more from it. If progress halts with the LLND, I will switch to that protocol.

If you want info from someone doing the protocol, please search for WWJD20. She has posted about her experience and progress here on the forum. Also, you can e-mail her and I am sure that she would be more than happy to answer any questions that you have.

Good luck!